Onco 22 and must decide on Chemo

LeesaAnn · October 2011

LeesaAnn · October 2011

This is torture! My MO told me whether or not to have chemo is MY decision. WTH? My thought is that if she thought I SHOULD have chemo, she would of just said so. My score of 22, reduces to 14% taking Tamoxifen for 5 years, and then an additional 5 years of the other hormone drug for post menapause. She told me chemo would reduce that by an additional 2-3%.

I am 47. ER+ PR+ HER2-, multi-focal tumor IDC & DCIS totaling in at 4.5 cm. KI67 17%, Mastectomy of right breast, negative nodes. Lymphoinvascular Invasion, Stage IIa, Grade 2. I lost 80lbs before dx, with another 30 to lose. I've totally transformed my life with diet and exercise. Was walking 20-25 miles per week, and biking 20-40 miles per week before surgery.

My logical brain tells me a 2-3% benefit is not worth the VERY real risks of chemo side effects. What worries me is the LVI aspect to my cancer. I am so confused and tortured over this. This is agony. Anyone else here facing a similar situation? Experience with LVI stats? I'm grateful for any input.

coraleliz · October 2011

2-3% isn't a large benefit but it is enough for some. I declined chemo for a 6% benefit. I am also very active/athletic. One of my tumors had LVI. This meant RADs for me even though I had a BMX. The chemo decision was hard for me, even with an oncotype score of 4. Very impressive pre-BC weight loss & "transformation". Keep up the good work!

voraciousreader · October 2011

Why not ask your doctor to have your case presented to a tumor board? Then a group of physicians can come up with a treatment plan. Otherwise, I would suggest that you get a second or perhaps a third opinion. Deciding on chemo is a very difficult decision for women with Oncotype DX scores in the intermediate range especially when there is LVI. However, keep in mind, the Oncotype DX score is only one tool of many in deciding whether chemo is right for you. You are raising important questions.

Don't forget to also check out the NCCN 2011 breast cancer treatment guidelines.

Congrats on committing yourself to a healthy lifestyle and good luck with your treatment. Thoughts and prayers to you.

Racy · October 2011

LeesaAnn, yes chemo has side effects but in the main they are temporary, bearable and manageable. Of course, I don't know your situation and whether you might have other medical problems that make chemo more risky for you.

If you are gathering information about the option of chemo, find out what drugs and treatment schedule are being recommended. Some are harsher than others. Some take longer than others. Different oncs may have different recommendations so it's a good idea to get at least two opinions.

While everyone, I think, would prefer not to do chemo and have to deal with the side effects, there is a lot of information here to help you through.

I did chemo and, while it was not fun, I would do it again for a theoretical potential 1% benefit. But that's just me. Waiting for my hair to grow back is the hardest part as it takes sooo long. If I had my time over I may sway more towards using the cold caps which I decided against at the time.

Good luck in making the decision that is right for you.

somanywomen · October 2011

LeesaAnn, it's true we all have to get as much info as possible and make the decision of chemo or no chemo and hopefully live with that decision..My onco score was 21 and after doing a lot of research about chemo benefit vs side effects from chemo, I decided no chemo...On the website Oncotypedx.com...the below info under the tab "Managed Care Organizations" then go to Unmet Need In Early-Stage Breast Cancer..the info I copied below helped me make my decision...But please get all your own info to make your decision...

For each patient, this benefit must be weighed against the risk of adverse events. Chemotherapy-related adverse events occur in almost all patients and more than 1 in 10 women experience a serious or life-threatening event.⁴Between 1 in 100 to 1 in 500 women actually die from side effects related to the administration of chemotherapy. Late adverse effects of chemotherapy also occur, including development of second primary cancers in more than 1 in 20 women and cognitive dysfunction, or so-called “chemo-fog.” Other adverse effects include ovarian failure, cardio-toxicity, nausea and hair loss. As Paik et al. concluded, “the likelihood of 10-year distant recurrence in patients treated with tamoxifen alone is about 15%, at least 85% of patients would be over-treated with chemotherapy if it were offered to everyone.”²

LeesaAnn · October 2011

Thank you Ladies! Interestingly I saw the Radiologist today for the first time. My surgeon, when it was learned that I have LVI, referred me. The Radiologist said she does not recommend radiation in my case because I am Stage IIa, less than a 5 cm tumor, negative nodes and not a grade 3 cancer. She did however state that I should have chemo.

She went on to explain that the Oncotype Study was with women whose cancers were under 4cm. I'm outside that criteria at 4.5. Also LVI is an additional consideration. When I questioned if it was possible they missed finding a positive node, she said there was 5% chance of that possiblitiy. The Oncotype results estimated a 2-3% benefit from chemo. The Radiologist said given my particulars she believed that benefit would more likely be 5-10%.

If I opt for chemo it would be a short course with Cytoxan and Taxotere, just 4 cycles. I understand that this is not as rigorous as other chemo regimes.

This is more confusion to add to an already difficult decision making process. My case is being presented to the Tumor Board for discussion. I hope to learn that outcome at my Surgeon appt. next week. To say this is overwhelming is the understatement of the year!! Thank you, I am so happy to have a place to voice my fears and concerns with women like you who understand and are walking along the same path. God bless.

Racy · October 2011

LeesaAnn, I'm glad you are getting more input. Adjuvant Online is another tool that the doctors use to estimate chemo benefit. Did your rad onc use that or was she making an educated guess? Ask them to run your stats through Adjuvant Online and see what it says. I am guessing the rad onc was not out of range with her assessment.

It's good to know that if you elect to do chemo it would only be four treatments. Hopefully others who have had that cocktail can input.

Would you be working through chemo? I didn't, which made it much easier to manage side effects, but a lot of ladies work right through.

Keep us posted.

momand2kids · October 2011

for what it is worth- we have similar stats and I too had to make the decision--but my onc at least said "it would be hard for me not to give you chemo" and my surgeon said "why not make an already good situation better?" so that was helpful.

I had no LVI invasion, but if I did, I would have had chemo. I did have chemo- ACx4 delivered over 8 weeks--I was very healthy going in and withstood it well--then went on to radiation (had a lumpectomy) and that was fine.... worked full time, have 2 small kids, tried to exercise regularly during the treatment--- it was not a walk in the park, but it was doable.

I think the tumor board is a great idea-- along with a second opinion from another hospital.... I don't advocate for chemo-- it is a personal decision with its own risks, but I knew I wanted to get as close to 0 as possible. I have never regretted it.

good luck

dlb823 · October 2011

LeesaAnn, most of us have only one shot at ridding ourselves of bc. If it comes back anywhere other than in the breast, it's a whole different ballgame. For that reason, and because your Oncotype score really isn't that low, and because of the LVI, I think chemo might be a prudent choice. (Of course, I don't know you and I'm not a doctor. I'm simply going by your stats and what I've learned over the past 3.5 years.)

A question a bc survivor friend asked me when I was trying to decide, was... "If you didn't do chemo and it ever came back, would you regret not doing it?" That's a question only you can answer for you. In my case, I knew I would never, ever forgive myself. Chemo was no walk in the park, but it's behind me now, and if you saw me today you'd never know I went through it.

One other thing to keep in mind... What if for some reason you have a problem with Tamoxifen or an Aromatese Inhibitor (the one that follows Tamox)? I did, which now makes me extra happy I made the decision to do chemo.

Just some random thoughts I hope will be helpful ~ (((Hugs))) Deanna

bcisnofun · October 2011

Leesaann - I am your age. I had IDC in one breast and DCIS in the other. My oncotype was 12 with was an 8% chance of recurrence. Just like you, chemo gave me maybe a 2% improvement in odds and came with risks that I researched as best I could. Deciding yes or no to chemo was a MUCH harder decision than the BLMX for me. My doc (who is a brain cancer survivor himself) recommended chemo because of my fairly young age, with a young child and am otherwise in good health. He felt the risks outweighed the benefits, but left it up to me. I finally came to the same conclusion as Deanna. I had to know if it comes back that I did everything possible. I stopped thinking of 2-3% as a percentage and started thinking of it as 2-3 people of every 100 who would have mets if they didn't do chemo. I didn't want to be one of them. I finished chemo a couple of months ago and while I definitely had doubts along the way as to whether I did the right thing, now I'm glad I did. I sure know how difficult this decision is and respect very much that other people have a different opinion. I think that's why the docs leave it up to us - everyone has a totally different perspective. Congrats on your hard work and success with weight loss. Very impressive. Sending positive thoughts your way as you make this decision.

VictoriaB · October 2011

Hi Leesaann,

We have some similar stats. I have IDC/LCIS/DCIS and LVI. My onco score came back under 10. Ask your onc if the slide sent to genomic included the LVI. Interestingly, my sample sent to Genomic did not include the LVI so we are redoing the test, this time to include the LVI to see if the score goes up.It is my understanding that the oncotype study was conducted on POST-menopausal women. We are in a diff. category, as we have more years in which to get a recurrance. My onc said we just cannot know if there are any other cells circulating anywhere, and, as Deanna said, we have one chance to get them which is chemo. That is why I am considering chemo. Another option is lupron injections to shut down the ovaries, which in a few *small* studies, has had the same effects as chemo with much less se's. Does anyone have experience with that? Or can anyone speak to the results of the taylor x study?

mdg · October 2011

I also had LVI and an oncotype score of 17. I was 45 at DX. The rest of my stats are below. I was told by one med onc no chemo. The other one said I would benefit from it. My tumor was grade 2. I had to decide. I decided on chemo for a few reasons:

1. My son was only 4 and I wanted to do everything I could physically do to be here for him.

2. I was already doing an aggressive BMX so why skip chemo

3. I was concerned if for some odd reason I could not tolerate tamoxifen I would regret not doing chemo

4. LVI - this weighed heavily in my mind that there was a pathway established that the cancer could have already spread by blood

My med onc had me do TCx4. It was not that bad. I used cold caps to keep my hair. I am almost 6 mo's post chemo now and am glad I did it. I know I have done everything available to me to try to beat this. I have been on tamoxifen since June and other than hot flashes I am tolerating it well.

PLJ · October 2011

dlb823 · October 2011

PLJ said... "So, yes, they assume individuals with LVI were also in the study."

So, my question would be... IF they could separate out recurrence stats for those with LVI (which I don't think even the Taylor-X will give us), would those stats be any different than overall stats?

Does it seem odd to anyone else that LVI doesn't somehow weigh into Genomic's test results? What am I missing here? Deanna

PLJ · October 2011

I felt the same way, Deanna and was surprised that this was not a stratifying factor for them. One would think those with LVI would have a worse outcome and different stats. PLJ

Anonymous · October 2011

LeesaAnn - My oncotype was 23, and I had two opinions. I was 44, and that was a significant factor for the oncologists in recommending chemo. They gave my benefit as higher than 2-3 %, more like 6%. I felt that same as Deanna. Due to my oncotype score in the gray area (no lvi) my oncologists prescribed CMF which is a long chemo cycle, but very tolerable. Many of my bc friends had 4 cycles of T/C and did fine.

I think it's always a good idea to get a second opinion, and I'm glad they are reviewing it with the tumor board. I hated that they gave me so much input in this decision.

Good luck with this- let us know how you are doing!

LeesaAnn · October 2011

Thank you everyone, I am so grateful for your support and input. I feel so lost and alone in making this decision. Hearing about your experiences and the decisions you ultimately made helps me so much.

Racy I'm not aware if Adjuvant Online was utilized? Is this something we can access or just the Drs?

dlb823 You comment about most of us having one shot at ridding ourselves of BC really ressonated with me. I had not thought about it in this way exactly. Thank you.

mdg I really would like to learn more about your experience with Cold Caps! (i.e, the cost, did the Onco team help you with application, how did you arrange it?)

PLJ thank you for sharing your experience. My Miotic rate was 2. It's my understanding that the shorter course of Taxotere and Cytoxan typically have reduced side effects vs. a full regimen.(Which makes me wonder if the Drs are just giving us something because we want it and they've dialed it down in strength where it won't make that much of an impact? Scary how my brain thinks sometimes.)

It's frustrating to be stuck in the middle of the OncoDx test range. I realize that the medical community doesn't really have definitive recommendations for us. One thing the RO said to me really made an impact. She said had I presented with this dx before the Oncotype test was available, EVERY Dr. would recommend chemo for me with no hesitation. Wow, that really hit home.

Crap. This sucks. I had a window of time where I thought I would escape chemo, but its looking more and more like I should take it on. I'm trying to come to terms with losing my hair. I know it sounds vain. I keep thinking about how LONG it will take to gain a 'normal' appearance again. I will be looking for a job at the end of this, can't really imagine going on interviews with a wig or head scarf and being considered seriously for a job. I'm trying to let all of this go and just focus on what I have to do to rid myself of cancer. I'm having a difficult time doing this.

glasslady062011 · October 2011

LeesaAnn:

I had IDC, but my tumor was caught early. I had a very low Onco score, so I was not going to benefit from the 4 cycles of chemo my MO had discussed with me. He wasn't going to put me through that treatment for a 3 to 4% benefit.

Everyone is different, but thankfully we have these tools/technology to help us with these decisions. I realize it can get overwhelming, but you do what feels right for you.

dlb823 · October 2011

LeesaAnn, I wonder if talking to another onc or two might be helpful? You may not get any additional information, but sometimes what we need is just that one little tidbit of information -- that one insight that no one else mentioned in exactly the same way -- to help us solidify our thoughts on what's right for us.

Also, look into the Penguin Cold Caps. I didn't use them because I didn't know about them at the time. But quite a few women on BCO have. (Use the search box to upper right to find at least one ongoing thread about them.)

I don't think oncs ever "dial down" chemo regimens to appease patients. TCx4 was the original regimen for TC. Some oncs felt better using 6, especially for women with multiple positive nodes, possibly because it was a newer regimen. Now I believe there's a trial comparing 4 to 6. CMF (mentioned above) is known to be a regimen with perhaps the lightest SEs. My onc @ UCLA has an on-line video comparing the various chemo regimens for bc, their SEs and stats. PM me if you'd like a link to it.

If you do decide to do chemo, join the support group that forms each month here on BCO for getting through chemo. (Click on Forum Index above and scroll down to the Chemotherapy Forum.) Going through it with other women truly eases the journey immensely! (((Hugs))) Deanna

Cjn5274 · October 2011

First, huge kudos on your life transformation! Wooooow that is cool! You are an inspiration. I am in the same situation that you described, but I have ILC, roughly 3.5cm, no vascular invasion, no nodes involved, 46 yo. Onco score was 18, so 11% chance of recurrence for me. My MO also told me that it was up to me. I originally had a lumpectomy. Margins were not clear, so I had a re-excision. Margins are STILL not clear so now I'm having a BMX on 11/4 to hopefully get rid of it all. I am going to wait to see the final pathology report after the MX before deciding on chemo. Unless something surprising shows up, I'm leaning towards not doing chemo. (FWIW, my MO said he would also prescribe TCx4 regimen). I have no advice for you as it's such a personal decision, but I agree with what I've read on here: No matter what decision you make, don't look back. I wish you all the best.

Cindy

lalisa · October 2011

Great thread, thanks to everyone for sharing. My dx was in 2007, but I so remember having to make this decision myself. I would recommend 2nd and 3rd opinions just because of Dr biases. Some seem to need to do everything possible and others more evidence based. I am more comfortable with just evidenced based. My onco score revealed my bc to be responsive to tamoxifen, but not so responsive to chemo, so that is the course I have taken.

momand2kids · October 2011

Leesa

so, for the vanity part (and I totally get it about the hair--we all do). I started chemo in January-- buzzed my hair--- got a fabulous human hair wig cut like my old hair... wore it everywhere for 7 months-- on the last day of June, I had short, short hair, but I was done with that wig.... so I wore my hair short--kept getting it cut, colored and trimmed each month (my hair grows fast). At the time, it seemed like forever, but it really was not.

But, the single most important thing I learned is that NO ONE NOTICES..... my wig was so great, no one ever gave me a second look--- my hair actually looked better than it ever had (I was always lazy about styling).

And now, my hair is all back, long-- looks like it did before. Believe me, the hair thing was the hardest part for me, but really, no one else notices..... so, if you go forward, get the best wig you can and, as someone once said to me "rock the wig".... or, if you prefer scarves, there are lots of options...

good luck

sflow · October 2011

Hi,

I was onco # 22 also, but my stats are pretty different. Also, my onc left if up to me. My IDC was only .8 cm and no LVI. I was 56 at the time of the diagnosis and since there are heart issues in my family, I opted out of chemo. I am also widowed and my sons were in their teens at the time. I could not imagine how challenging life would have been for us had I been too ill to drive and take care of them. I will hit my 5 year mark on November 15 and try hard not to look back. Best wishes on your decision and treatment plan.

LeesaAnn · November 2011

After much thought, getting second opinions, and prayer, I've decided to go with chemo. Taxotere & Cytoxan x4. I've also decided to use cold caps. This was the hardest decision of my life. For me it came down to a couple of things. I wasn't comfortable relying 100% on my Onco score. Until the results of the TailorX trail are known, I don't think we (women with intermediate scores) can't soley rely on a number on a scale to make this decision.

In the end the fact that my tumor was 4.5 cm, I had lymphoinvasion, I was one point from being classified as having a grade 3 cancer were all much more persuasive than my Onco score. Knowing that 100% of Doctors would of recommend chemo to me prior to onco testing also was very convincing.

I wanted to share how I made my decision so it may help some other woman who comes after me. The real gift will be when we know the results of that trial, and future women will not have to go through this awful decision making process.

PLJ · November 2011

FWIW I would have made the same decision in your situation. I wish you an easy chemo ride and a long, happy, healthy life!

Hugs,

PLJ

mdg · November 2011

LeesaAnn: I am glad you made a decision. I have seen you on the cold cap thread. Please PM if you have any questions about the cold caps. I am so glad I used them. Good luck!!!

Onco 22 and must decide on Chemo

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