Has anyone Declined Chemo?

red,

There is a thread on BCO that is called alternate treatment for informed women, something close to that. There are ladies that declined chemo. You might try to check that out.

I'm a little older than you (was 59 when I was diagnosed) but fell into the same category with an Oncotype score of 27. My oncologist recommended chemo. I went for a second opinion at the National Cancer Institute Research Center in my state and saw the doctor who was the head of their breast cancer clinics. She recommended against chemo indicating that the Oncotype was just one of the factors to consider. I had a small tumor with a "mucinious" label which factored into her recommendations. It was a hard decision but I went without the chemo and know that I made the best decision for me. My oncologist supported it as well after I had gone for the second opinion. My oncologist holds the other doctor in high regard. One other thing that helped me was really studying the Oncotype reports as well as the studies that support them. The wide range of responses for women in the middle factored into my decision. Good luck as you make these hard choices. 

I did not need to have radiation as I opted for a BMX after having bad margins with my lumpectomy. I am on Tamoxifen and will switch to an AI after two and a half years. My MO had planned on five years of the therapy but indicates we may look at longer (up to 10 years) down the road. Generally they prefer to start with the AI and then do Tamoxifen but I have osteopenia so we decided to start with Tamoxifen first. This was a really  hard decision for me and I am confident in the decision, no matter how it all turns out. Where I may have doubts down the road is that when I went for the second opinion, no one thought I needed to have a second pathologist look at the actual slides from my tumor. A month or so after I had made the decision on chemo, I read on another BCO forum (for women with Mucinous Carcinoma) a posting from a pathologist who strongly recommended all women with mucinous carcinoma have a second review of their pathology slides by a pathologist at a center where they were more likely to see more cases. Mucinous is fairly rare with just around 3% of BC being that type. My MO didn't think it was necessary but I went ahead and arranged for the second review. With the holidays, it was about two months by the time the second pathologist reviewed the slides and I got the results. Turns out I do not have the "pure" mucinous carinoma but a "hypercellular" mucinous variant. My kind does not have as favorable prognosis as the pure version. By then, it was after the "window" for choosing chemotherapy and I don't know whether or not if we'd known what we know now when I had to make the chemo decision that my choice or the doctor's recommendations would have been any different. What I know is that I made the best decision with the information that I had at the time. I wish I'd had the second pathologist look at the slides sooner, but again, until I saw the info on one the BCO forums, that hadn't occurred to me or been mentioned. Long story from me, just know that you are making hard decision. You are clearly giving it careful consideration and you will make the best decision that is right for you. Good luck during this hard time. 

Redlessi

To do chemo is such a personal decision as it is a very difficult thing to go through. I am finding that it is taking a long time to recover from the chemical assault on your body. One of the moms at my school had a very similar breast cancer profile to me ( hers was slightly more agressive with a grade 3) and she decided not to do chemo and I decided to go for every treatment available.  She has chosen to eat very clean, excersise constantly and completly reduce the stress in her life. She only had a lumpectomy and is not doing any other type of treatment and as far as I know she is doing fine.  Again, it is her educated decision and what works for her life and family.

I wish you luck with your decision.

i am triple negative metaplastic carcinoma and only had one chemo treatment and then withdrew after developing diverticulitis. My MO agreed that it was too risky to continue.

Odds i was given was 30 percent chance of recurrence without chemo and 20 percent with.

A little over 3 months after chemo i have peripheral neuropathy with much leg pain.  My arthritis is much worse and i have no energy.  I can't imagine how people doing several treatments manage and i applaud them.

It is a difficult decision.

I found radiation fairly easy after the rigours of chemotherapy (I was node positive, so chemo was a given, but did have a lumpectomy).  Follow your RO's instructions meticulously about caring for your skin; I had what amounted to a moderate sunburn by the end of treatment, but did not peel or have discolouration.  Tamoxifen has been a non-issue for me; a few minor side effects and - almost three years out - I'm doing well.  With tamoxifen, though, if you find yourself struggling, you can always talk to your MO about switching brands or switching to an AI.

Hello Redlessi,

I'm so sorry to meet you here but you are doing exactly the right thing to gather information for decision making.

Chemo was a gray area for me too, here is some of my experience:

At age 52 I had a 1.1 cm IDC tumor (lumpectomy) removed with clear
margins, grade 2, ER+/PR+, HER2-, but 2 nodes were positive so it was spreading (stage 2a). My Oncotype score was 6, so a gray area of whether chemo would be helpful, but clearly showing that my cancer had a strong hormonal component. I also had genetic testing which was all negative. I got quite a few opinions and took some time to think of what I wanted to do, what I felt was best for me. Very traumatic time and I'm sorry you have to go through this. One Medical Oncologist described the tumor as being like a dandelion and once it started to spread, poof, the nodes were involved, but no one could know exactly where else it may have already traveled. I had all kinds of tests that were all negative too (nuclear bone scan, PET/CT, etc.) so nothing was showing up as having metastasized. This was significant to me but since my cancer was so strongly hormonal I just was so unsure what to do. Several oncologists were recommending a tough course (ATC or TC) of chemo and finally an oncologist who specialized in breast cancer only reviewed my case in detail. She offered CMF (an older and easier chemo) which I opted to do and it was not fun, but very doable. I was able to keep most of my regular activities and exercise during the 6 months and had minimal hair loss. I also had radiation tx to the cancer breast, 33 sessions which was a breeze after chemo. The breast surgeon took two additional suspicious lumps out of the other breast but there was no cancer. After chemo and rads I took tamoxifen for 2 years (I was pre-menopause at the time of dx) and have been on femara now for a little over a year, so a little less than 2 years to go for 5 years of hormonal tx. I decided against BMX which my breast surgeon recommended but was a gray area with other doctors.

One of the reasons I opted for chemo was because I had been dx with early stage cancer and the info I gathered showed that kicking it hard gave me a good chance of no recurrence. I read the story of Susan G Komen too.

It is such an individual choice that my best advice is to continue info gathering until you know in your heart what is best for you. I talked to everyone I know, read here, went to a number of doctors for advice. This is all so un-fun, but necessary to face and get through. I'm four years out now and really and happy with the choices I made. There is a certain level of uncertainty that I've come to be fairly comfortable with. I may not have hit it hard enough, maybe I should have opted for BMX, maybe chemo did damage to my body that wasn't necessary, who knows. But I figure we don't go through life without being changed by our experiences and we just do the best we can. Sorry to get philosophical. When I got the news I had cancer I just kept thinking about my husband and sisters and brother, my best friend who is like a sister, all my loved ones and I really wanted more time with them. All this weighed with not wanting any treatments at all, not wanting to go through any of this.  

I wish you all the very best and I know you will get all the info you need and make the right decision for you.

Take care, stay stong and kick it to the curb.

Love and hugs,

JeanBean

Hi again, just a thought that you might want to pop in and talk with the CMF gals at  All Topics → Forum: Help Me Get Through Treatment → Topic: CMF Question

They were extremely helpful to me with chemo / no-chemo decision too.