Stage II without chemo?

Anonymous

Has anyone been diagnosed with Stage II, with only one positive sentinel node (out of 22 nodes) and gone without chemo? My oncologist recommended Cytoxan and Taxotere, but she said that I would benefit "more from Tamoxifen" and that the benefit of chemotherapy is about 10-12% in general. I asked her to run the Oncotype test, which will take about 3 weeks. If I get a low score, is it crazy to skip chemo even though only one lymph node was affected? I understand that if I get a high score, it would be obvious that chemo is the right option. I was also told that a CMF approach avoids hair loss but is less effective. There is so much information to go through and I am so scared of losing my hair and feeling like a "cancer patient". Because right now, I don't feel sick, and I don't ever want to.

labelle

I had one positive node, but with an oncotype score of 11, neither the OC at Vanderbilt nor the tumor board at UT Knoxville Breast Center recommended chemo for me. Per both, a low oncotype trumps one positive node when it comes to deciding whether or not to do chemo. A few years ago that would not have been the case. I've read posts from quite a few women on this board with the same-one node positive with a low oncotype-and several have been advised not to take chemo. Hold on to your hat and wait for the oncotype score.

ALittleBitBritish

yes, one node 1.4 cm of cancer in it, no chemo, my BS wasn't keen to have to Oncotype but my ONC said okay, score 9, thank goodness - my grade was 1 though, slow growing....

Lenn13ka

Loving ... Stage 2 .. One positive node .. Oncotype 17.. No chemo ( from Dana Farber). I have been on tamoxifen for 2 1/2 years and just switching to anastrazole this week. More and more of us are able to skip chemo based on biology these days. My original MO reccomended TC but was totally OK with me skipping chemo as well. The benefit wa just so small. You will see all that information on your oncotype Dx report. Good luck.

Chris13

Same here with low oncotypes (ILC is multifocal) of 8 and 15. One node of 3 mm, just over the 2 mm that is not counted as invasive. With the several tumors, I had a mast, so no rads. And no chemo which is not effective with ER+ and low oncotype scores.

Chris13

Same here with low oncotypes (ILC is multifocal) of 8 and 15. One node of 3 mm, just over the 2 mm that is not counted as invasive. With the several tumors, I had a mast, so no rads. And no chemo which is not effective with ER+ and low oncotype scores.

coraleliz

I had 2 positive nodes(3.0mm). My oncotype was 4. I skipped chemo.

FastWalker

lovingislivin: I would get a second (and even a third) opinion. Your situation is not so cut-and-dried. Your primary tumor was 3 cm and needs to be carefully weighed into the equation. Other factors to be considered - your age, menopausal status, and KI-67 percentage. The oncotype score is a very valuable tool, however, other things need to be weighed into your decision - such as your overall tumor burden - the size of the original breast tumor plus the size of the tumor in your lymph node. Did you have a micromet (under 2 mm) or a macromet (above 2 mm) in your lymph node?

Several months ago, I was agonizing over the same decision. I was stage 2a, grade 1, age 46, 1 positive lymph node ( 8 mm macromet) out of 4, premenopausal, 1.4 cm primary tumor, highly ER+ 96%, highly PR+ 94%, HER2-, KI-67 6%, Oncotype score of 12. All three of my medical oncologists recommended chemo:

1. Medical Oncologist #1 (Aggressive MO): AC-T dose dense or TC

2. Medical Oncologist # 2 (Middle of road): TAC or TC originally, but changed to CMF when made aware of my pre-existing neuropathies.

3. Medical Oncologist # 3 (Stated doesn't like to give chemo): Originally said no chemo, but changed to CMF because Oncotype score was based on lymph node positive postmenopausal women. . . He also said had I been a few years older, he probably wouldn't have recommended chemo.

I was considering CMF, but I ultimately decided against chemo. Oncologist #2 and #3 said that it was a "reasonable" decision. Reasons I turned down chemo - I had a low grade tumor (grade 1), I was BOTH highly ER and PR positive, my KI-67 was low, my primary tumor was only 1.4 cm, and my Oncotype score was 12. My medical oncologists made sure I understood I was going against "standard of care," however, they agreed that I would receive little benefit from chemo.

It's a very hard decision to make. Don't be afraid to ask tons of questions.

Molly50

I was stage llB, 2.1 cm tumor, two positive nodes one 1.6 cm and the other 2mm micromets and extensive LVI. My oncotype was 13 and since the TailorRX study came out just as my oncotype came back it was recommended no chemo for me. Straight to radiation after healing from my umx. I also started anastrozole. Highly PR/ER positive HER2 neg.

Leighrh

I went to MD Anderson, which I thought would get me better, more advanced treatment. I was stage 2b with 1 of 3 nodes positive. The oncotype was not even offered to me. They said that there was not enough info yet on wether or not the oncotype was accurate with 1-3 positive nodes... so I did chemo. It sucked yes, but if you have to do it, it's not as bad as you imagine!

Anonymous

Thank you for all of your responses and well-wishes. FastWalker, my current MO seems to be focusing on my age, family history (BRCA+ negative), and my generally good health (knock on wood!) as reasons to do chemo. The tumor was 3cm by 2cm, so not totally round. My Ki-67 score was 25%, which I know is somewhat high. The sentinel lymph node had a macromet of 4mm. The tumor is 75% ER positive and only 2% PR positive, and I am post menopause. HER2 on IHC came back as 2+, but a ISH testing showed "non-amplified". The tumor is grade 2, but I noticed the "mitotic count" is only scored as 1, which means the cells are not dividing very quickly. I don't know if that affects anything. I'm glad I asked my MO for the pathology report, she didn't even want to go over the details of it until I asked about the specifics. I could tell she was reluctant to do the Oncotype test, and she said that whatever the result it would not change her opinion. I am trying to get an appointment at the breast cancer center here in San Diego. Supposedly they are on the cutting edge of breast cancer trials and studies. Hopefully the oncologist there will give me some more insight.

If I do decide to do chemo, I would probably do CMF. My body doesn't tolerate medicines very well and it scares me how strong Taxotere would be on my system. Is CMF just as bad with side effects?

FastWalker

lovingisliving: When staging breast cancer (and to guide treatment decisions), they go by the biggest tumor measurement - in your case 3 cm. Your KI-67 score points to you most likely being "luminal b". (A KI-67 percentage greater than or equal to 14 % is considered luminal b, less than 14 percent is luminal a.) In most cases (not all), chemo is generally recommended for luminal b breast cancer. Please see the following articles to see how they differentiate between luminal a and luminal b:

http://www.breast-cancer-research.com/content/pdf/...

http://www.nature.com/modpathol/journal/v27/n4/ful...

Here is the treatment recommendations from the National Cancer Institute for the different types of breast cancer: (Be sure to look under: "Table 7 Systemic Treatment for Early Breast Cancer by Subtype"):

http://www.cancer.gov/types/breast/hp/breast-treat.../_1027_toc

Also, the National Cancer Comprehensive Network (NCCN) puts out guidelines every year that medical oncologists use to make treatment decisions. These are considered standard of care. I registered for both the patient and the physician information booklets. (The physician ones go into greater detail.)

http://www.nccn.org/professionals/physician_gls/f_...

I would also check out the cancer recurrence calculators online. Bear in mind that these are more general -- and not as specific as the Oncotype score, which tests your specific genes. However, I found these to be helpful in making my decision:

http://www.lifemath.net/cancer/breastcancer/therap...

http://www.adjuvantonline.com/

*The cancer recurrence calculators are also helpful to see the differences between first generation chemos (CMF), second generation (TC) and third generation (AC-T)

The mitotic count being one is a great thing - as you stated, it means the cancer was dividing more slowly. . . One thing that my medical oncologist told me, however, is that Grade is subjective - meaning you could show the slides to several pathologists and could possibly end up with different grades. (I thought this was nuts when she told me - but another doctor verified this as well.)

Your medical oncologist sounds exactly like my first opinion medical oncologist! She didn't want to go over my pathology report, didn't want to give me percentages of recurrence, didn't want to order the Oncotype test, and said even if she did, she would not go by the results. I finally persuaded her to order the test, but true to her word, even when it came back a score of 12, she refused to consider it. However, my 2nd and 3rd opinions were a lot more flexible - they were willing to give me percentages of recurrence -- and they also were willing to factor in the Oncotype score.

I am glad you are seeking a second opinion. I have a suggestion - try to search for "San Diego" and "Southern California" on this website and then post a question in those threads asking for recommendations for medical oncologists. That's what I did under the NJ threads. Women on this website are very helpful and willing to share information. It's important you get a medical oncologist you are comfortable with - they will determine your treatments and you will be seeing him/her for years to come. (It's not to say you can not switch down the line, but it's more of a hassle.) Also, it's always better to get a breast medical oncologist, if at all possible. My second opinion was a breast medical oncologist (80% of her patients are breast cancer) and I found her to be the most knowledgeable. I found I learned something important from each of the 3 medical oncologists I went to, which helped me in making my decision.

I too was scared about the chemo side effects - I am also very sensitive to medications. When I was considering CMF, the medical oncologists told me that the side effects were low and that the large majority of their patients tolerated CMF quite well. CMF is the chemo they use for older/more elderly breast cancer patients because it generally is more tolerable than the more recent generation chemos. Also, Memorial Sloan Kettering still frequently uses CMF for early breast cancer due to the lower toxicity.

Here is a CMF thread that may be helpful to you:

https://community.breastcancer.org/forum/6/topics/...

One downside to CMF is that it is longer than TC. CMF is generally given 8 times every 3 weeks for a total of 24 weeks/6 months. However, in my case, I would have chosen the CMF even though it is longer since I was afraid of TC doing further damage to my nerves. (I had pre-existing neuropathy from herniated disks.) Also, I was assured that there was almost no difference between CMF and TC in my particular case. (Some women have a high risk of recurrence so CMF would not be suitable.)

I hope I didn't give you too much information or overwhelm you. I think that knowledge is power. The more you know, the better decision you will be able to make. I hope you are able to get in for a second opinion (and even a third) soon. BTW, when you go for appointments, I would recommend bringing someone with you - it's just so much information to absorb.

I hope you are well and wish you success in making the best decision for your particular case.

FastWalker

lovingisliving: Oops - one more thing I found helpful lol!

There's an oncology nurse Lillie Shockney ( a 2-time breast cancer survivor) over at John Hopkins University who runs a free "Ask an Expert" forum online. Here is the website address:

http://www.hopkinsbreastcenter.org/services/ask_ex...

One_Bad_Boob

When I was first diagnosed with IDC Stage 1 Grade 3, no lymph node involvement, the recommendation was to do lumpectomy and radiation only. I got a second opinion and they recommended radiation and chemo because my cancer was grade 3. They left the decision for chemo up to me and I opted to do it because it was 4 rounds. As much as chemo sucked, I feel like I have a little extra insurance that they got all of it.

Anonymous

FastWalker: Thank you a hundred times for all of that information! It must have taken you a while to write all of that, and I appreciate all of it. I'm going to take my time to read the official guidelines and recommendations. I went ahead and did the first calculator you posted (for some reason the second one won't load), and it showed that the difference between TC and CMF is 4% for me. I am starting to realize that I probably should do chemo, but I am not sure which route to take. It all feels very surreal, like I'm living in someone else's life. I was told by my MO that I would do 4 rounds of TC, or 6 rounds of CMF since she doesn't think I need that much. In addition to traditional therapy, I want to live a healthier lifestyle. I have already started eating much healthier, even before my diagnoses. My biggest "no-no's" are red meat and dairy products, so I focus on a lot of chicken, fish, and fruits/veggies. A lot of articles and books I've read make me think that this is the least I can do to help my body build its own defense.

One-Bad-Boob, how were TC treatments? What were your biggest side effects?

Prayers and hugs to all.

labelle

The oncotype test is a lot more accurate than using an online calculator. I'd wait for the score of the oncotype and discuss it with my OC before making any decisions. It has been shown to be a very good tool when in comes to deciding whether chemo is likely to be beneficial or not.

twirler62

I was diagnosed with invasive ductal carcinoma stage 11 grade 11 in 2011. The tumor was huge.  I found it but ever after it was so large it was visible to the eye and felt like a lump of charcoal it was not visible on mammogram.  I rushed to the most "respected" medical facility in Atlanta.  I relied pn medical people to design and implememt my treatment.  The plan was chemotherapy,  surgery, radiation and hormone inhibitor. My cancer was estrogen positive. I had taken birth control pills and hrt for menopausal symptoms.   The first chemo-I had an allergetic reaction. So they tried another. I tolerated ? This one.  I suffered Dvt and pulmonary embolism s and shingles.  The chemotherapy continued for the prescribed time. I was so sick and was hospitalized several times.  The hospital called my family to say good bye because my body was shutting down and they didn't know  the reason. My children asked about a steroid that I was taking. Well! The hospital apologised.  The steroid was for the first chemo and they forgot to tell me to stop taking it. This mistake got through 13 high level hospital staff members. After mastectomy the surgeon told me that the chemo had only reduced the tumor a very small amount.  She questioned the logic of chemo.  Months of incredible sickness lost hair immune system for very small reduction?  Surgery was performed.  Radiation was cancelled because I was so sick. I did attempt all of the hormone inhibitors but could not tolerate any of them.  There were lots of physical issues and severe depression.

2013 at routine check up I was diagnosed with the same kind of cancer in almost the same place. In the absence of breast tissue the cancer was in the muacle and lymp nodes.

Another surgery and this recommendation was radiation.  Surely I could tolerate radiation.  I suffered through months of having my body burned black. All through treatment my instinct keep telling me to stop. I was very sick.  The doctor convinced me that this was important and my life depended upon it.  At one treatment I fainted and came omce again to death s door-no blood pressure no heartbeat.   911 was called and one again I live! I tried to be a radiation drop out but the physician convinced me that the cancer would return with a vengeance.  I labored on attempted the hormone inhibitor again. Again could not tolerate them.

The radiation damaged my lungs to the point that I have collapsed lungs.  An entirely different challenge.  My oncologist finally concluded that my body did not tolerate cancer treatment.

Should I be faced with another cancee diagnosis I THINK that I shall do the minimim treatment. Surgery perhaps and skip the life draining treatments.  I am 71 years of age and would like  to see my children and grandchildren through life for a few more years.  Thank you for reading. Everyone's situation is different so follow your instincts.  Pray a lot and listen to yourself. 

.

twirler62

I was diagnosed with invasive ductal carcinoma stage 11 grade 11 in 2011. The tumor was huge.  I found it but ever after it was so large it was visible to the eye and felt like a lump of charcoal it was not visible on mammogram.  I rushed to the most "respected" medical facility in Atlanta.  I relied pn medical people to design and implememt my treatment.  The plan was chemotherapy,  surgery, radiation and hormone inhibitor. My cancer was estrogen positive. I had taken birth control pills and hrt for menopausal symptoms.   The first chemo-I had an allergetic reaction. So they tried another. I tolerated ? This one.  I suffered Dvt and pulmonary embolism s and shingles.  The chemotherapy continued for the prescribed time. I was so sick and was hospitalized several times.  The hospital called my family to say good bye because my body was shutting down and they didn't know  the reason. My children asked about a steroid that I was taking. Well! The hospital apologised.  The steroid was for the first chemo and they forgot to tell me to stop taking it. This mistake got through 13 high level hospital staff members. After mastectomy the surgeon told me that the chemo had only reduced the tumor a very small amount.  She questioned the logic of chemo.  Months of incredible sickness lost hair immune system for very small reduction?  Surgery was performed.  Radiation was cancelled because I was so sick. I did attempt all of the hormone inhibitors but could not tolerate any of them.  There were lots of physical issues and severe depression.

2013 at routine check up I was diagnosed with the same kind of cancer in almost the same place. In the absence of breast tissue the cancer was in the muacle and lymp nodes.

Another surgery and this recommendation was radiation.  Surely I could tolerate radiation.  I suffered through months of having my body burned black. All through treatment my instinct keep telling me to stop. I was very sick.  The doctor convinced me that this was important and my life depended upon it.  At one treatment I fainted and came omce again to death s door-no blood pressure no heartbeat.   911 was called and one again I live! I tried to be a radiation drop out but the physician convinced me that the cancer would return with a vengeance.  I labored on attempted the hormone inhibitor again. Again could not tolerate them.

The radiation damaged my lungs to the point that I have collapsed lungs.  An entirely different challenge.  My oncologist finally concluded that my body did not tolerate cancer treatment.

Should I be faced with another cancee diagnosis I THINK that I shall do the minimim treatment. Surgery perhaps and skip the life draining treatments.  I am 71 years of age and would like  to see my children and grandchildren through life for a few more years.  Thank you for reading. Everyone's situation is different so follow your instincts.  Pray a lot and listen to yourself. 

.

mdg

I also wanted to let you know many of us women that have had chemo used Cold Caps and saved our hair. I used them with taxotere and Cytoxan and had success. It is an option if you do end up doing chemo. Like everything else along the BC road, it is a personal choice. Good luck.

marijen

Fastwalker. My Mo is like your first one. I'm wondering, did you ever figure out why she was so close minded? You know sometimes it comes to you later on. I'm planning on changing.

Anonymous

Twirler62, I'm so sorry you had to go through all of that, but I am glad you are doing well now and I pray that you will stay healthy. Sometimes doctors want to throw the kitchen sink at cancer without taking into account what the patient would go through. I agree 100% that each person is different. When they offered to do a lumpectomy+radiation for me, I knew it was something I didn't want to do, but I went to different consults anyway to hear what different doctors had to say. They all said a lumpectomy was reasonable and it would have the same outcome. They didn't take into account that I would probably go insane with worrying about whether I would get cancer in the same breast again. My left breast has always been a source of worry for me. From cysts, to hematomas, countless ultrasounds, mammograms, and 2 biopsies after 10 years of problems led me to a cancer diagnosis. I always had a feeling in my heart that one day it would turn into cancer, and it did. And even 10 years ago, I said that if I ever had cancer, I would have a mastectomy, and I did.

I was told that there was a 20% chance that cancer would be found in the lymph nodes. My doctors always dismissed the size of the tumor whenever I brought it up and said that it didn't affect any of their recommendations. Well guess what, it was in one lymph node! Anyway...today I'm going to make an appointment with an oncologist who is involved in a lot of clinical studies and trials. His profile bio says that he selects "the least toxic and most effective treatments for breast cancer". I hope he can explain in depth what I'm really facing.

Rose_d

Loving,

I wanted to respond since we had a similar diagnosis. I was stage 2, grade 2, with one positive node (.25cm). Strongly ER/PR positive, HER-. I was 39 at diagnosis.

I went to Sloan Kettering which I believe tends towards aggressive treatment.

My onc wouldn't do the oncotype score. For her my age trumped everything else. She discounted the validity of the oncotype test for someone of my age. She also said the oncotype test measures the likelihood of recurrence 10 years out and she was worried about more than 10 years for me which certainly made me feel better.

So I did chemo and the heavy duty stuff - dense dose AC and T. I also wanted to do anything I could to avoid chemo and avoid losing my hair. But at the end of the day I was so worried about dying and so worried about always being worried whether I had done enough that I did what they recommended.

Interestingly, Sloan Kettering (at least at the time) also did not allow people to use the cold caps. Their rationale was that there were no studies about whether or not using them increased the chances of someone developing mets (by freezing your head you are keeping the chemo from reaching your scalp and in theory cancer cells could be hiding there). They did say they were going to start a clinical trial to test the cold caps but it hadn't started yet.

So off I went for chemo and baldness. In terms of "how bad was it" - I would say it's certainly no picnic but it's not as bad as you think it will be. My biggest side effects were - constipation (which I should have done a better job controlling) and a general yucky feeling on AC. I threw up once which I think was because I hadn't eaten enough before my 2nd treatment. On Taxol the side effects were - a rash that was an allergic reaction but really made me look terrible and numbness in my feet.

I'm now over three years out from chemo. I would say my only lasting side effect is that my feet hurt if I am standing or walking for too long. It's hard to say whether that's from the chemo but I suspect it might be. My husband thinks it's just that I'm getting older Otherwise I have no lasting problems and (knock on wood) I'm healthy.

I just wanted you to know that, while I absolutely understand not wanting to do chemo, if you do end up doing it, it will be ok.

And my hair is back as full as ever!

Best of luck to you,

Rose

Disappointed

Had the same diagnosis - for breast and node. REFUSED chemo. Took radiation, which was extremely difficult on my body. Eighteen months later, just dealing with two of the several negative issues radiation brought to my general health. REFUSED the 5-year drug therapy that they will try to put you on after chemo and radiation. I have blood work done every six months for cancer markers. Thus far, all is good. PetSCAN came out with zero cancer cell clumping. Two family members had cancer and took chemo and radiation. Both died after 5 years. Radiation is NOT beneficial for up to 35% of the patients who go through it. Good luck on your final decision and I wish you an easy journey with your choices of treatments. Less worrying will keep your body stronger.

cookiegal

Yes

Sjacobs146

I don't think it's crazy to skip chemo if you have a low Oncotype score. My oncotype fell into the intermediate range, combined with my relatively young age (48) and positive lymph node, doc recommended chemo. If anyone of those three factors had been different, I don't think that she would have recommended it.

Anonymous

Thanks for all your responses. I guess the consensus is to wait for the oncotype. It was put in on 11/18, so probably a couple more weeks until the results are in. I still don't have an appointment with a second opinion oncologist since it takes them a while to review the case before they let you schedule an appointment.Before surgery, I had a full-panel genetic test done. Previously I only did the BRCA+, which came back negative, but my genetic counselor seemed to think that there was some genetic link due to my family history. Apparently I have a variance in the BARD1 gene. The thing is that there is very little known about this mutation so it's unclear whether it actually increases breast cancer risk. It will take a while until the reports have a definitive answer.

Disappointed, I won't need radiation since my tumor was small and not near the chest wall. I wanted to avoid radiation so I chose a mastectomy instead of a lumpectomy. I'm sorry you're still dealing with its effects.

I hope and pray you all stay cancer free!

Brutersmom

lovingisliving. I am sure once everything is in you will make the right decision. One doc said my cancer is Stage IIA Grade 3 and the other said Grade IA grade three. 0/2 nodes I will go with the second from the cancer teaching hospital. After 2 opinions I went with no Chemo. My oncodx score was 24. High ER/PR+. The bottom line was I went from 16% chance of recurrence to 12% chance with chemo. 4% was not enough to risk the side effects of Chemo. The doc left the decision to me. Everyone was on the fence. I choose no chemo. Cancer is scary. Over the years I have felt doctors tend to err on the side of to much medication and we need to be our own advocates. There is no right or wrong decision. My only recommendation is get a second opinion from a teaching hospital.

marijen

Brutersmom - I think you figured right. 4% not worth it.

Anonymous

Well, today I emailed my oncologist's office about my results, and I got a response that they are in, but they wanted me to make an appointment to discuss everything. I hope it's good news. I asked them to see if they can email or fax them to me because I want to get a second opinion (I didn't tell them that part). This oncologist told me that she wanted to do chemo as an "insurance policy" regardless of whatever the Oncotype said. But if my score is low, it will take a LOT of convincing for me to do chemo.

Thank you all for messages, articles, and well wishes. I will keep you posted about my results and of course my decision.

Hopeful82014

Loving - That "chemo as an insurance policy" mind-set tends to minimize the risks, in my opinion. I'm all for chemo if it's needed but am very wary of it if there's no clear, substantial benefit.

I'm sorry your MO didn't provide the results to you today and hope you'll get a copy tomorrow. Hang in there!

coraleliz

Rose- Interesting that they ran the oncotype test on your friend who was ER-, thought it was only for ER+. But I could be out of date