Chemotherapy: 3 Medical Oncologists: 3 Different Opinions

ksusan · May 2015

My numbers were similar, but because I had a positive node, my providers advocated for chemo, pointing out that "Although by the numbers this was an "indolent" cancer, it's already moved out of the original site."

ShetlandPony · May 2015

FastWalker, what a difficult position to be in. My opinion, and that's all it is, is that if you do decide on no chemo because of the low oncotype, you might want to be aggressive with the hormone therapy because of your age and the node. That is, ovarian suppression and an aromatase inhibitor, rather than just tamoxifen. Or at least OS with tam. Also I would consider the whole breast radiation that comes with a lumpectomy as a good thing to treat axillary lymph nodes.

Get enough opinions and discussion so you can feel that you are making the best decision based on what you know. What would cause you the least regret if in the future there were to be serious side effects or a recurrence? If possible get an opinion from a major cancer center. But don't just rely on the prestige of the place; try to talk with an onc who will discuss your research with you and is willing to bring his/her knowledge, experience, and intuition to bear on your case. You have educated yourself well, but the responsibility for the decisions should not all be on your shoulders. Don't worry about needing to talk more with the oncologists; this is your body and your life. I'm sorry; this is so hard!

By the way, the oncotype test double-checked the pathology report.

Is it a combination of tubular and IDC or ILC?

jessica749 · May 2015

Good luck. Go with your gut, which sounds like #2.

Please know that basically this is what happens: the more opinions you seek, the more you have to weigh, the more grays. Unfortunately we want it to be black/white, think that because it's 'science' it will be.

This has been my experience not just with cancer but with other medical situations. One of my non-cancer doctors hurt his hand severely and told me about going to get medical opinions, from 'expert' at the Hospital for Special Surgery in NY, to colleagues at the well known private Manhattan hospital where he was affiliated, to a third well recommended 'inside' doctor. And each one gave him a different opinion, from def. "operate" to "don't operate!" to "well, you could operate". I was so excited that my doctor was telling me a story that was like the ordinary person's experience with the medical community. I knew there was a great lesson in store. "So, Dr. ____., tell me, what did you do? How DID you decide?"

And he told me "I went with the doctor that I had the most confidence in." The one he had a sense of confidence in, personally. that he felt best about.

Applying that method, it sounds like #2 is your person. I think db gave good advice above re: considering the credentials of the oncologists. I am assuming they are all 'expert' but if one is clearly more so than the others, that should weigh in to the scale.

Your situation is complicated by the fact that you are premenopausal. It makes your case less open and shut re simply hormonal therapy.

You might consider paying out of pocket for a second opinion from a top institution. It might give you the confidence you need to go ahead with one of the choices. Don't know what that would cost, but I'm sure you could find out. Not sure if that would be affordable….thinking maybe $1000 to get pathology to review slides and oncologist to recommend????

FastWalker · May 2015

Ksusan: According to the NCCN guidelines, I wouldn't have been offered chemo if it weren't for my one positive lymph node. Some studies/doctors are now putting 1 to 3 positive lymph nodes in a different category than 4+ positive lymph nodes, where 4+ are considered "a higher tumor burden" and anything 3 and below is not. . . I think the other tricky thing is being pre-menopausal. (My first MedicalOnc seemed to weigh that heavily.) With all this being said, most of my doctors feel I will get little to no benefit from chemo. (The bad thing about our case is having a positive lymph node does increase our risk, but grade 1 cancer seems to have very little or no response to chemo. I want to reduce my risk, but I am being told chemo probably won't do it.)

ShetlandPony: That's exactly where I am starting to lean - no to chemo and yes to aggressive hormonal therapy. Aromatase inhibitors are tricky since it's hard to tell if someone is truly menopausal when getting the Zoladex shots. I think to play it super safe, they would probably initially put me on Tamoxifen, if I choose the shots instead of chemo. Perhaps later they could switch me to an aromatase inhibitor. . . Still mulling things over, but I have ruled out the more aggressive chemos -- and if I were to finally decide on chemo, it would be CMF. (I was told that CMF's only benefit might possibly be ovarian ablation.) . . . My Radiation Oncologist said she would do whole breast radiation plus the lymph nodes. She also said that recurrence in the lymph nodes after radiation is almost unheard of. . . My second opinion breast surgeon also said that to me - that I well educated about this and that it isn't fair that the decisions are falling on my shoulders. She said the doctors have all gone to medical school and have been dealing with breast cancer for 20 plus years -- and to make them accountable. . . I live in NJ. I so wish I could get an opinion from Sloan Kettering. They don't take my insurance though. . . I went to 3 medical oncologists and not one of them has mentioned research on my particular stats. I have been the one bringing up all the research and bringing in the articles. It's really a shame. . . It is good that the Oncotype test seems to be in agreement with my pathology report - at least SOMETHING agrees lol! . . .The tumor is IDC 95% and DCIS 5%. Originally, it mentioned tubular in the biopsy pathology, but my actual surgical pathology makes no mention of tubular.

jessica749: You are right - it seems the more opinions, the more stuff to consider, and the more disagreements. I am beginning to see that all of this is more art rather than science. . . That was an interesting story about what that doctor went through and how he came to his decision. (Glad to know that doctors go through the same things!) . . . I didn't feel comfortable with doctor #1 - it was like she was talking AT me instead of WITH me and recommended the chemo with neuropathic side effects despite me telling her how dire my pre-existing neuropathy has been. . . Doctor #2 initially gave me a bad impression. She was literally on the phone with other people for about 65% of my visit. (Used both her cell phone and the phone on the wall, jumping on and off several times.) I didn't get any info from her during my first visit. I swore I wouldn't go back. In my desperation, I revisited her and that time she gave me her full attention. She also returned my phone call, which not all doctors do. One other thing I like about her is that she is flexible - willing to consider CMF dose dense and also the ovarian suppression. The thing I don't like is she has done neither at her practice. She also told me that all three options - CMF, just Tamoxifen, and Tamoxifen plus ovarian suppression - are all equal. There has to be one that is slightly better for me . . . Doctor #3 is the one who originally mentioned the ovarian suppression shots and he also does it at his clinic. I was also considering him as well. What I don't like about him is when I ask him a question, he doesn't really answer it. (My dad came with me and said the same thing!) He can also be a bit dismissive at times. I do like he is experienced with the ovarian suppression since this is something I am leaning slightly towards. . . I agree - my premenopausal status complicates this. At one point, I was leaning more towards just Tamoxifen. Then I considered this may not be enough. That's when I started to consider ovarian suppression - although the side effects don't sound fun and I am not really sure how big the benefit would be - I haven't been able to tease that out. I don't think my doctors know.

Thanks so much to all the wonderful ladies that have helped me here!

ShetlandPony · May 2015

Hmm, you might want to look for Doctor #4. The ideal would be good communication and lots of experience. Can you go to a cancer center?

Ovarian suppression by zoladex or lupron would be easier than ovarian suppression by chemo! Probably you would start with Tam and then add OS after a while, so it wouldn't be so much change all at once. Yes, you could switch to an AI later when you are post-meno. If, after a trial of OS, you wanted to have an ooph instead of the shots, you could do that. Which would also give you the choice of either Tam or an AI. Your treatment plan isn't set in stone; you can see how you do and make changes if necessary.

I assume you have looked at the SOFT (Suppression of Ovarian Function) trial results so far? More should be coming.

FastWalker · May 2015

ShetlandPony: I am so tempted to go to a fourth doctor. If I had more time, I probably would. I was told that I need to get started on either chemo or radiation very soon since this has been going on for a couple of months already. There is a cancer center in Southern NJ called Fox Chase. It's pretty far from me, but I know the main Fox Chase in Philly is top notch - so maybe their satellite location in NJ is as well. I'm worried that so much time has past from my surgery. I wish I had known about Fox Chase in the beginning. . . You are quite right - Zoladex/Lupron would be easier than CMF for ovarian suppression. For some people who aren't as highly ER+/PR+ as me, they would get an additional benefit from CMF (besides just the ovarian suppression). In my case, although not 100% definitively proven, studies show I would probably do just as well on ovarian suppression as CMF. Problem is the results of the studies won't mature until after I am done being treated. Figures lol! . . .I like the idea of only starting with Tamoxifen and then later adding Zoladex so the changes would be less extreme. I will have to mention that to my MedOnc. . . I just became aware of the SOFT trials. I will need to study those more intensively. I did read a blurb - not sure how accurate it is. It said women 46 years old (my age) would do just as well with just Tamoxifen as they would on OS/AI -- and that the younger ones (35 and under) are the ones who really benefit from OS/AI. I have to look into that further. . .I am so sorry about your Stage IV diagnosis. (And here you are helping me!) I hope you are doing well - or as well as possible under the circumstances. ((((HUGS))))

FastWalker · May 2015

rose50: I am so very sorry you are going through all this. I hope that over time your symptoms get less and less -- and will disappear all together. When I was 32 years old, I herniated 5 disks. I went from being very active and healthy to a 100-year-old overnight. I had great difficulty walking, sitting, dressing, showering, bending over, sleeping. I was in pain 24 hours a day 7 days a week. The pain and disability went on for many years. Then I started noticing I would have a little pain-free time during the day . . . then a little more . . . then a little more. Today, I would say I am about 85-90% pain-free (at rest), and the pain I do get is much less intense than before. There are still things that "trigger" it - like cold weather, hot weather, doing too much, sitting too long, etc., but it is now manageable, where it was FAR from it before. . . I tell you all this to give you hope. Nerve pain can take years to heal. Nerves are among the slowest things to heal in your body. My neurosurgeon told me it could take up to a decade. I thought I would be left in agony for the rest of my life. But, I am doing MUCH better now. I am hoping that this will be the case for you - hopefully, sooner than later! . . . I still can't believe my first opinion MedOnc recommended either AC-T or TC when I told her about my past crippling nerve pain -- and that some still remains today. . . . Thank you for the warning. At first, I wondered if I should go through with the TC. I am so glad I didn't.

labelle · May 2015

My oncotype score was 11, done prior to surgery using cells from my needle biopsy, so I was told no chemo. Final pathology after surgery showed one node being positive, but both my surgeon at one breast center and the oncologist at another breast center, agreed that one node did not change a thing in terms of chemo-but it did convince me to do radiation after my lumpectomy (something I had considered refusing). I was 51 when diagnosed and perimenopausal, KI67 3%. I have yet to have anyone explain how or why a tumor such as mine (very low grade, tubular) could have spread to a node, but since I had no conflicting advice the decision not to have chemo (onco did not recommend or even offer it to me) was pretty easy.

FastWalker · May 2015

labelle: I was originally told the tumor was about 50% tubular from the biopsy. After the lumpectomy, I was told it was 95% IDC and 5% DCIS, no mention of tubular. However, I was told it was still grade 1. The staging had changed from Stage 1 to Stage 2A because of the one positive lymph node. . . I asked my doctors how a grade 1 tumor could have spread to a lymph node. They had no idea either. One doctor said that the cancer could have been in me a long time and thus, had the time to spread. . . Another doctor said the tumor could have been a mixture of grades - and that the higher grade was the one that broke off and went to the node. (That's kind of unnerving.) How big was the tumor in your node? Mine was 8mm. . . Some doctors don't worry too much about one node. Others say if there's just one node, it could mean that cancer has escaped to other areas of the body. (Also unnerving.) I am glad that all of your doctors were on the same page - and from two different institutions. It's hard when they are not.

cookiegal · May 2015

ok since you asked

I can not imagine doing chemo with an oncotype of 12.

(Unless you have a very high KI-67)

you are at the point where the risk of serious complication is equal or greater to the chemo benefit

Also as my onc put it, there will never be a study showing chemo has more of a benefit for ER+ than we though.

Every study over the past 5 years has backed up oncotyping.

My bias, I declined chemo in 2009 despite one node and a 22 oncotype. My oncologist wasn't really happy, but admitted science was leaning that way. At the time I was probably the first node positive woman on this board to decline chemo.

Here I am.

If you want to do more than tamox, you could do AI's + Lupron. Or have your ovaries out, which was literally the first treatment for breast cancer.

ShetlandPony · May 2015

Fastwalker, thank you for the kind words. I am doing well. In spite of it all I am enjoying my life and my loved ones, and my treatments are working well. I am so glad if I can help in any way. I can so relate to your predicament: wanting to look at all the research, wishing the doctors would go into more detail, just wanting clarity. It is so frustrating that there are important questions that have not been answered yet, especially for those of us diagnosed when premenopausal, yet decisions still have to be made. We just have to do the best we can with what we know now. I had to make decisions knowing the SOFT trial was going on but results would not be out in time to help. As it turned out, it would not have changed the recommendations I got. Regarding SOFT, age mattered, but also things like nodes and tumor size. I agree that you should start your next treatment soon.

Rose50, wow, I'm so sorry you have all the taxotere fallout. I hope you will experience healing.

coraleliz · May 2015

Fastwalker- I had 2 positive nodes, each 3mm. I was 52 & perimenopausal when diagnosed. Late menopause runs in my family(not BC!). I had trouble getting the oncotype test. I finally got it ordered & it came back "4". I didn't do chemo.

I had bilateral tumors. My right tumor was larger than my left. The positive nodes were associated with my left(smaller tumor). Reasons I was given 1) it's been there a long time 2) it was smarter & learned to travel 3) some tumors are just more aggressive than others So basically, they really don't know.

Both my tumors were "old lady" grade 1 tumors.

I was going to turn down chemo without the oncotype test being done. The benefit of chemo was 6%. My MO used an online program,Adjuvant online & gave me a printout. But knowing the oncotype was available, I felt I needed that info.

I remember being in your shoes all to well. Hope your treatment plan comes together soon. Good luck.

FastWalker · May 2015

Cookiegal: My MedOncs don't trust the Oncotype test for my particular case. Two MedOncs said they wouldn't even order it because they wouldn't go by the results. They said that the data on positive lymph nodes has not matured yet. Additionally, the studies on 1-3 positive lymph nodes were using the menopausal population (as opposed to the premenopausal population.) I was thrilled to get a score of 12, but don't know how heavily to weigh it into my decision because of my doctors' reservations. . . If you don't mind my asking, are you taking Tamoxifen? Did you opt for OS?

ShetlandPony: I am so glad you are doing well and that the treatments are working well! . . . You have been a great help.

Coraleliz: Same with me - Late menopause runs in my family and no breast cancer. A score of 4 is great! - so glad you finally got the Oncotype test. At least it validated what you already felt -- and the Oncotype test is much more specific to you than Adjuvant Online is. Are you taking Tamoxifen?

FastWalker · May 2015

Another thing I was wondering . . . How big of an issue is Tamoxifen resistance? . . .Say, if I were to skip chemo since there probably would be little added benefit, and then I found out I couldn't metabolize Tamoxifen or that the cancer was resistant to Tamoxifen, would chemo then provide a benefit?

jessica749 · May 2015

Here is a link from dr Susan Love foundation on that question.

http://www.dslrf.org/breastcancer/content.asp?CATI...

jessica749 · May 2015

sorry linking isn't working!

here is what it says. I wanted to look it up because others have been mentioning this, as if it's an obvious thing that then every competent oncologist would do on their Tamoxifen taking patient. Not so simple.

Should I have the CYP2D6 tamoxifen resistance test?

Updated January 2011
A growing number of companies have begun offering "direct to consumer" genetic testing or genetic "home testing."

One of the tests now available is the "tamoxifen resistance" or "CYP2D6" test. This test examines a gene called 2D6, which produces the enzyme CYP2D6. This enzyme is necessary for the body to metabolize a number of drugs, including tamoxifen.

Different people have different variations of this gene. Initial studies had suggested that some variations metabolize 2D6 drugs very quickly, while others don't metabolize them as well, or at all.

A study presented at the 2007 San Antonio Breast Cancer Symposium suggested that women who inherited a certain variation of the 2D6 gene were almost twice as likely to have their breast cancer recur, even though they were more likely to complete their tamoxifen treatment. About ten percent of the population has this variation.

The study also found that women who scored zero on the gene test rarely had any side effects from tamoxifen, whereas women with the highest scores did. This finding appeared to confirm previous research that had suggested that the side effects of tamoxifen were an indicator that the drug was working, and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly. It also supported a Food and Drug Administration Clinical Pharmacology Subcommittee recommendation, made in 2006, that the tamoxifen label carry a warning that the drug may not be as effective in women who carry a version of the 2D6 gene that does not metabolize the drug.

As a result of this research, between 2008 and 2010 some breast specialists began to recommend that a patient considering tamoxifen first have CYP2D6 testing. Others suggested that women who went on the drug monitor their side effects. If you were having side effects, it meant the drug was working. If you weren't, then it wasn't, and you would need to pursue other options.

As more women began to be tested, researchers continued to study tamoxifen resistance. And at the San Antonio Breast Cancer Symposium in December 2010, researchers presented data from two of these studies that brought into question what many doctors had come to believe about the CYP2D6 enzyme, tamoxifen and tamoxifen-resistance testing.

These studies used data from two large clinical trials that had been done to compare the effectiveness and safety of tamoxifen and an aromatase inhibitor. (Aromatase inhibitors are metabolized differently than tamoxifen, and are not affected by CYP2D6). These findings showed that women who had mutations in the genes that control the enzymes that metabolize tamoxifen were NOT more likely to have a recurrence, and that the scoring system that differentiates women into poor, intermediate, and extensive metabolizers did NOT predict recurrence. The studies also showed that women on tamoxifen who used antidepressants that were thought to inhibit CYP2D6were NOT more likely to have a recurrence.

In sum, the researchers concluded that for postmenopausal patients with hormone-sensitive early breast cancer, CYP2D6 testing is not justified to determine whether to give tamoxifen. In addition, the presence or absence of hot flashes should not be used as an indicator of whether tamoxifen is effective.

So, where does this leave us? Clearly, more studies need to be done. An overview of the data presented at the Symposium noted that, since 2003, 178 articles have been published on tamoxifen resistance. Fourteen of these studies showed that CYPD2D6 was associated with breast cancer recurrence in women on tamoxifen, and 15 found that it was not. This suggests that, right now, there appears to be little reason to have CYP2D6 testing, since it is now not clear what the findings of this test really mean. It also means that if you are not experiencing side effects, you should not conclude that the tamoxifen is not working.

References:

Rae James M. for the ATAC Group. Lack of Correlation Between Gene Variants in Tamoxifen-Metabolizing Enzymes with Primary Endpoints in the ATAC Trial. Presentation, 2010 San Antonio Breast Cancer Symposium. Dec. 10, 2010

San Antonio Symposium Daily Newsletter #2, 33rd Annual San Antonio Breast Cancer Symposium, December 8-12, 2010

jessica749 · May 2015

San Antonio Breast Cancer Symposium in December 2010, researchers presented data from two of these studies that brought into question what many doctors had come to believe about the CYP2D6 enzyme, tamoxifen and tamoxifen-resistance testing.

These studies used data from two large clinical trials that had been done to compare the effectiveness and safety of tamoxifen and an aromatase inhibitor. (Aromatase inhibitors are metabolized differently than tamoxifen, and are not affected by CYP2D6). These findings showed that women who had mutations in the genes that control the enzymes that metabolize tamoxifen were NOT more likely to have a recurrence, and that the scoring system that differentiates women into poor, intermediate, and extensive metabolizers did NOT predict recurrence. The studies also showed that women on tamoxifen who used antidepressants that were thought to inhibit CYP2D6were NOT more likely to have a recurrence.

In sum, the researchers concluded that for postmenopausal patients with hormone-sensitive early breast cancer, CYP2D6 testing is not justified to determine whether to give tamoxifen. In addition, the presence or absence of hot flashes should not be used as an indicator of whether tamoxifen is effective.

So, where does this leave us? Clearly, more studies need to be done. An overview of the data presented at the Symposium noted that, since 2003, 178 articles have been published on tamoxifen resistance. Fourteen of these studies showed that CYPD2D6 was associated with breast cancer recurrence in women on tamoxifen, and 15 found that it was not. This suggests that, right now, there appears to be little reason to have CYP2D6 testing, since it is now not clear what the findings of this test really mean. It also means that if you are not experiencing side effects, you should not conclude that the tamoxifen is not working.

FastWalker · May 2015

jessica749: Kind of makes ya afraid to put all the eggs in the Tamoxifen basket. The more I learn about cancer (and its various treatments) the more I realize no one knows anything. . . Thanks so much for the information. No wonder my doctor said that Tamoxifen metabolizing tests are not accurate. He did say that since I take no other medication, I don't have to worry about anything interfering with Tamoxifen. . . He also said that the cancer could become resistant and not respond to Tamoxifen either initially or down the road. . . This is why it's so hard deciding on treatment options. If you count on Tamoxifen to do the job and it doesn't, you have no protection. . . My Oncotype score indicated I would see little benefit in addition to Tamoxifen. I wonder if there was no Tamoxifen, would I then see a significant benefit? (My report only shows results with Tamoxifen included.) . . . Maybe this is why all my medical oncologists are still leaning (slightly) for me to do chemotherapy - for the added insurance.

FastWalker · May 2015

jessica749:

"Tamoxifen can work as a wonder drug, inhibiting cancer growth and shrinking tumors without the severe side effects often associated with chemotherapy [4–5]. Unfortunately, 30–40% of patients who take tamoxifen become resistant to endocrine therapy within 3–5 years."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3855007/

AND

"Unfortunately, a subset of patients who received adjuvant tamoxifen would eventually experience relapse and die as a result of the disease, 30% of ER+ tumors were not prevented by tamoxifen in National Surgical Adjuvant Breast and Bowel Project(NSABP) prevention trial(P1)"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951414/

Just when I thought I could safely avoid chemotherapy . . . .

art4life · May 2015

not sure if I am posting in the right place but I finished radiation in March and just noticed the "orange peel" texture of my treated breAst. Taking Arimidex daily and due to see Onc in mid June. Can't find anything about getting ibc after radiation. I had lobular breast cancer, stage 3-A- lumpectomy April 2014. Waiting to hear from Onc.

ShetlandPony · May 2015

I think I saw a study suggesting that while CYP2D testing showed no benefit overall, when only premenopausal patients were considered it appeared to show benefit. If you are interested I will try to find it.

The hard thing to accept is that we don't know for sure what will work for a particular person. All we have to go on are statistics from groups of people, and it annoys me when a study doesn't do a separate analysis by menopausal status or tumor subtype (IDC vs. ILC).

FastWalker · May 2015

art4life: Sorry - haven't had radiation yet so not sure what you are referring to. There is a radiation section to this website, where you could post your question: https://community.breastcancer.org/forum/70 GOOD LUCK!

ShetlandPony: That's interesting. Yes, if it doesn't take too long to find the study, I would love to take a look. (But don't knock yourself out looking for it. :-)) Thank you!! . . . I so agree with what you said - I hate it when they lump everyone together, different cohorts react very differently to different treatments. Then, we (as patients) are supposed to guess how a particular treatment is/isn't going to work for us.

ShetlandPony · June 2015

I'm sorry, FastWalker, the study I mentioned above is not in my file box or in my bookmarks. I wish I could remember where I read it. I hope your onc can get the latest info for you.

FastWalker · June 2015

ShetlandPony: No problem - thanks so much for trying! I will give Dr. Google a whirl lol. Hope you're doing well.

Chemotherapy: 3 Medical Oncologists: 3 Different Opinions

Comments

Categories