Has anyone refused Chemo?

A lot of women on these boards went through chemo alone with no in person support system and made it through with the help of these boards.

Is it rough - yes, but it certainly can be done.  

SecretlyDistressed,

So sorry you were diagnosed with this disease. I post from time to time information about why chemo (or any other systemic therapy) is used so that each patient is able to have additional information regarding their decisions. You need to view a tumor as a collection of cells. Some of these cancer cells break off, and enter the bloodstream either directly or through the lymphatic system. From there, they may go to other places in the body such as other organs, at which point a patient becomes metastatic/Stage IV. Just because your lymph nodes are clean does not mean these cells have not yet broken off and entered the bloodstream. Also, it is impossible for any pathologist or imaging technique to see all of these cells. Sometimes, they are just not seen by the pathologist or the imaging techniques. So, if you were not triple negative, hormone therapy (such as Tamoxifen or aromatase inhibitors) would also be available to you as another systemic therapy. If you are triple negative, currently, chemo is the frontline systemic therapy available to you to mop up all these cancer cells which may be circulating in your body.

I hope this additional information helps in your decision making, and so sorry again that you found yourself here.

Also, I too was all alone with 7 year old twins to take care of when I went through chemo AC dose dense 4 times and 12 times of Taxol. I had to continue to work and had to tell my children how to call for help at night if something happened to me. Probably scarred them for life.

Chemo is better than it used to be, though still variable. I worked through it and walked every day. I had no nausea or gastric problems. I wouldn't say it was fun, but it wasn't as bad for me as I feared.

Let me first say that I have never had chemo, so I have no first hand experience with it (long story, but mets to my bone was discovered and I have only been on anti-hormonales). Before I was known to be stage IV, chemo was planned and my mo said I shouldn't work because I am a teacher of young children, but many can and do work during chemo.

Please reach out to any and all social services programs that can provide support (rides to chemo, cleaning for a cause etc.) to help lighten the load. The American Cancer Socity and your hospital social worker can be good resources. If you have two types of aggressive cancer, I'm not sure why you feel you likely won't have metastasis in the future, though no one has a crystal ball. Depending on your specific dx, your chances may vary, statistically, but “feeling" that you likely don't/won't have mets now or in the future is not a factor.

FWIW, I had a very indolent grade 1 tumor and much to everyone's surprise I already had a bone met. My point is that there is still so much that remains a mystery about bc, so please consider the fact that you already know your bc is aggressive. Ultimately, you are the driver and you have every right to make the choices you want. But please consider not just where you're at right now, but where you'll be long term . All the best

Hi, SecretlyDistressed,

I'm sorry that you find yourself here. Of course, you're distressed. This blasted cancer stuff is a scary business and especially challenging when tackled without a good support system. The drug protocol in your profile is the same one that I followed except for Perjeta. I'm a little confused by that because I thought Perjeta was for HER-2 positive tumors, not triple negative, but treatments evolve over time.

A friend took me to my first infusion & the day I switched from Adriamycin / Cytoxan (AC) to Taxol. Other than that, the only help I had was rides to surgeries or procedures requiring sedation and one week of friends bringing meals. I've had severe fibromyalgia for 30 years and shortly before diagnosis had dealt with six months of agony from an misdiagnosed herniated disc. I ultimately had five surgeries, two infections that delayed chemo, five months of chemo and 16 radiation treatments. As others have noted, it can be very challenging, but doable.

Despite having a Neulasta pod after each AC treatment, I was neutropenic (that word looks wrong, but I'm too tired to research it) following 3 of the 4 infusions so I can see why there might be some issues when it comes to working with animals. I had food delivered via Amazon Fresh (definitely splurge on that or another delivery service!) and avoided people other than medical visits, wearing a mask when I did have to go out. The main challenge I had was not nausea, but rather that my blood pressure ran low and my heart rate was constantly very rapid starting with the second infusion and continuing for a month following my final chemo infusion. I felt so weak that I had to use a rolling walker and take multiple breaks just getting to the infusion center; however, that seems to happen to a minority of people so it's quite unlikely that you'll experience that side effect.

My house was a horrible mess going into treatment because of the pre-existing issues I mentioned so I was too embarrassed to pursue the house cleaning program. If I could go back, I would put my pride aside & accept the help. My nurse navigator was apparently dealing with her own issues and provided virtually no assistance, but many do plus the American Cancer Society was a good resource for me. Again, please reach out for help.

As to the topic title about whether anyone has refused chemo, some people do with good results, but there is no right answer. I suggest pinning down your oncologist on what your "net" risk is; specifically, the risk of cardiac issues or other serious complications vs. the likely benefit offered by going through chemo. Of course, someone has to be that "rare" outlier, but you'll at least have some numbers to ponder. If you go forward with chemo, look for "Starting Chemo in October" or a similarly named topic. It's great to have the emotional support and be able to share concerns with others going through the same situation. I hope all goes well for you!

Lyn

I just finished chemo and probably could have done it alone if I had to. My only absolute need was a ride home from the infusions because the Benadryl made me too sleepy to take the bus, but I could have taken a cab or a Lyft or Uber if necessary. One of my parents drove me and usually stayed a few days after, just providing some company, but they were typically gone by the time my worst side effects hit.

I got in to trouble twice and I was alone both times. Once when I decided I was well enough to walk up to the market and then discovered I wasn't well enough to walk back, and the second time, when I was stuck in bed with unusually bad side effects as a result of my side effect management schedule getting messed up, but I had to pick up some anti influenza prophylactic my MO called in for me after potentially being exposed to influenza.

I took an Uber home from the market, and made a desperate plea to my sister to drive across town to pick up and deliver my medication. If I were entirely alone though, I would have been sure to have had a pharmacy that delivered on my file.

It's really not something to worry about doing alone though.

Ohmigosh, Secretly, having all those cancer subtypes? This isn't an area where one wants to be an "overachiever." That must be a lot to absorb emotionally, but just focusing on the next step should carry you through treatment.

I drove myself except for the two times I mentioned, but I didn't seem to have the extreme sleepiness that some others have mentioned from the Benadryl. Maybe it's because the fibromyalgia leaves me sleepy all the time so that is my normal.

Please let us know if we can be of help!

Lyn