Has anyone decided not to do chemo?

Lully

and do full breast radiation and tamoxifen by choice? Stage 1, grade 2, er/pr+, her2-, 1.9cm lumpectomy, 1/4 lymphnode 0.15 micromet, oncotype score of 26 

dlb823

Hi, Lully ~ I'm not sure why no one's responded yet to your question, so I thought I'd share a few thoughts.  Perhaps many are just too busy with holiday prep to be on bc.org much today.

What jumps out at me about the information you provided is that your Oncotype score (26) is a bit high -- probably high enough that chemo needs to be seriously considered.  There's very little in the stats you've provided to give us a clue as to why your score is 26, but obviously there's a somewhat aggressive factor in the 20+ genetic factors the Oncotype uses that is influencing your score.

Whether or not you do chemo is entirely your choice.  Personally, I had a really hard time wrapping my head around doing it, but -- in retrospect -- I'm glad I did it, although my stats were also quite different from yours.  One thing that might help you think it through is a website called cancermath.net.  I'll try to give you a link to the breast cancer page, which will give you some suggested stats w/ & w/out chemo:  http://www.lifemath.net/cancer/breastcancer/outcome/index.php

Another thing that might help are threads here called "Oncotype Rollcall," where many women have reported their Oncotype scores and decision about chemo.  (Use the search box to the left to look for them.)  

A third thing you might consider doing is getting a second opinion.  Not all oncs think alike -- especially about micromets (assuming you're referring to a lymph node), which some oncs consider a negative node, depending on the # of cells.  Whenever you have doubts about what you're being told by a doc, a second opinion can be really helpful.  

Hope this helps, and let us know if we can answer any other questions for you.   (((Hugs))), and glad you've found bc.org.     Deanna

Aruba

Lully,

I answered  your other post but thought I would post here too...

I had 1.5cm, no nodes, clean margins, lumpectomy.  Had Onco score of 26.  I am 53 and no history of cancer except grandfather who died quickly of leukemia at 61.   My MO said they had to recommend chemo as it may have some benefit (in that case think they must recommend).  My reduction of recurrence risk went down 4% more with chemo vs just hormonal (I take Arimidex since post menopausal).  I chose not to have chemo and moved forward with radiaition and now Arimidex.  I had full support of my team.  I think you have to weigh the possible side effects and most important... being able to live with your decsion with no looking back no matter what happens in future etc.  I was fine with that and felt quality of life as important as anything.  I called the Oncotype company to make sure we all were reading results correct etc.    Toughest decision I had to make through all of this!  I dug deep within myself and also had discussion with each family member...this decision could affect them too. Hugs to you as I know this is tough either way!

Please note that I had no lymph node invasion of any involvement with sentinal node biopsy...I very well could have opted other way if I had.  I did do 25 rads and 6 boosts.  Also keep in mind that from reading here, many have SE with the hormonals...once I made this decision on chemo, I knew I signed up for rads and at least 5 year hormonals no matter what.

Lily55

I had 5cm plus tumour area (no lump as ILC) and a large lypmh node underarm and a total of 7 out of 14 nodes affected with cancer.  I refused chemo for all sorts of reasons, and largely due to a big voice inside constantly telling me NO do not do this to us.........I did not want surgery or radiotherapy but did not have the same voice at all, this No voice woke me up at night....I took 10 weeks to make the decision and every time came to the same conclusion, stats (not that I believe in them as they are always out of date and very generalised out) gave me 4% benefit of chemo over 5 years and 12% over 10 years........

I know my decision was right for me, had another treatment (a systemic one that is not mainstream) and do hormones and did rads, which I regret as left pretty damaged by them.....

Hope this helps

BilateralBeauties

The key is to make your decision and not look back. At age 43 I wanted to swing with the biggest bat possible to try to see my son to adulthood. If you have children and they are all adults, the decision may be somewhat easier.

Cancer is a sneaky thing. Over treatment is real. Recommened treatment regimen is saving lives. Oncotype of 26 is the high end of score range being evaluated for improved response from chemo.

Make the decision. Live life. No regrets.

Momine

I wish, but mine was stage 3 with 7 nodes, so I did not even get an oncotype test. According to cancermath, I would have a 60% chance of being alive in 15 years without chemo versus an 82% chance with the chemo. The stats helped me put up with it. If you are borderline, it must be a really hard decision to make.

That said, in spite of 8 rounds of aggressive chemo, I am in fairly good shape almost a year after finishing up.

marlyhalli

I had to make my decision about 4 hours ago. I'm 59 yrs old. My lymph nodes were clear. Stage 1 Grade 2 cancer. Estrogen receptive. 1.6 cm. Oncotype score was 25. It was the hardest decision I ever had to make.

I have a wonderful female doctor and after about a half hour of changing my mind back and forth, but leaning towards chemo, I asked her, if it was her, what would she do. She told me that her personality is the type that has to make sure that every T is crossed and every I is dotted, so she thinks that she would take the chemo. I'm the same type. When I was working, I already had a solution in my mind, to every possible problem that might occur, on any given day. I was always prepared for the worst case scenario. The worst case scenario in this case is that my cancer re-occurs and I did not do everything possible to prevent that. I need to know that I did everything possible.

My husband and I are retired and were living the dream life that everyone hopes they have when they stop working. We travel. It was so tempting to just say no to Chemo, take some radiation and get on the road again. 

I was not comfortable with my decision until I read this thread. THE KEY IS TO MAKE YOUR DECISION AND NOT LOOK BACK. Thank you BilateralBeauties.

I don't have a lot of time to prepare. I start on Monday, this is Friday. Although I am still in shock, I am preparing, and accepting, and now know that I made the right decision for me. Lully, I understand how you feel. I could have went either way. Good luck.

adagio

Lully - I struggled with doing chemotherapy, and I read so much that I thought my brain would explode from all the information. The conclusion that I came to is that it is a risk either way. I had such a bad headache up until the day I made the decision to have chemo - once I made the decision, the headache left. I have only had one treatment and it was not pleasant, but I have made the choice and I will forward with it. I am just as undecided about radiation - in fact - I may consider not doing that because my cancer is left sided and I worry about the lung and heart being in the line of the radiation beam.

These are very tough decisions and are very consequential. Good luck with your decision. I am triple negative which is a fairly aggressive cancer, so I think that helped me with my decision.