Why am I called cancer-free but still taking pills with scary side effects?

Being called "cancer-free" while taking preventive medications can feel confusing, but these treatments are often prescribed to help reduce the risk of cancer returning, even when no active cancer is detected in the body. Many others in this community have navigated similar questions about long-term treatments and their side effects - sharing experiences and concerns here can help provide different perspectives on managing this journey.

My team doesn’t say cancer free. You may have cancer cells anywhere in your body so they all say NED ( no evidence of disease). The other drugs are to hopefully prevent any recurrence. Once you have cancer there’s always a chance you can get it again.

Denise well after my surgery my surgeon said I have good news your cancer free..I thought that was odd because I had to go to my oncologist for a treatment plan which I would have to have radiation and take tamoxifen..also just have another appointment with the surgeon i ask him will lmao waiting for radiation has the cancer come back..he said stop thinking like that you're cancer free enjoy your life and ill see you back in a year 🤔🤔🤔there is always a thought in my mind.something just don't seem right

Hi most likely they’re putting u on the that pill is preventive in .case some thing does pop up. I’m sure u still have to go for tumor markers and ur mris and pet-scan just to make sure there’s nothing developing. Sometime the effects sound worse than the actually purpose of the pill. I’m still doing the infusions every 3 weeks . It looks like for now I’m still on it. The only thing I can tell u is that my markers are continually coming down and I have no pain accept when I’m on my feet too long like everyone else who has a bad back. And I’m so tired I don’t want to do anything or go anywhere. But we’re still trying to move which hopefully will happen one day. Right now we have to buy furniture. If I told u how many stores we’ve been to u u would be warn out just listening to me. My husband is very selective as to what he chooses so it’s taking a little longer. Next I go for another infusion and than I see the Dr. after that it’ll give up 2 weeks to move .wish me luck we’re trying for the end of the month! Let me know how u’re doing and if u have any ?s. I’m always here for u. Just please keep in touch cause than I start to worry about u. Mary❤️

Hi Mary z im 1 month from my surgery so I haven't heard of getting the tumor markers..should I ask the onecologist?

Also what in infusions? You are in my prayers ❤️❤️❤️

That's such a helpful explanation - I completely agree that it's confusing to navigate this "cancer-free but still taking meds" phase, and you might also want to ask your oncologist to walk through exactly why they chose your specific treatment plan so you feel more confident about the decision.

Hi everyone. I have heard the term. "Cancer free" not sure I agree with that term. I feel my cancer is being managed, to try to prevent it from returning. I do try every day, to take each day to its fullest, always finding at least one thing to bring joy to my day, even if it is looking at the beautiful sun sets. My original breast cancer in 2008. Than again 2020. Also multiple skin cancer including melanoma. Sending positive thoughts and Strength.

Hi Theresa im sorry to hear..are you taking a pill?if so which one?

I am now on aromasin.

How are you feeling with it

Which pill are they recommendimg for you?

Theresa my oncologist recommend tamoxifen

Im still waiting to have radiation

I was on tamoxifen with my first diagnosis. Was recommended 10 yrs. But I stopped it on my own after 6 yrs. I had no libido, thought my libido would return and my marriage would get better if I stopped the medication. Marriage did not get better , actually got worse with the second breast cancer. I regret now stopping it. Since my cancer returned, I did have a hysterical with my ovaries out first, since it can cause uterine cancer... I feel all medications to treat cancer , can cause other problems, For me I m learning how to deal with the side affects. As I am not ready to leave this world. I have more trips to Disney to do.😊

Where do u live . Mary. The meds that they give u hopefully target the cancer cells from developing and spreading. That where the tumor markers come in. They give an idea as to where something is going on in ur body so they can treat it faster. Hope is well other wise and that u’re doing better. Keep in touch. Mary ❤️

It’s preventative treatment. Take care.

Hi I feel the same way. My doctor told me to take the pill for 5 years. I stopped taking because of the side effects that I felt. I was diagnosed in March of 2023 with triple negative breast cancer. I had my left breast removed, I had to do chemotherapy and radiation . The pill that the doctor prescribed to me made me feel worse.

I think a better term than cancer free is in remission. Being cancer free is statistically somewhat possible, but it’s always dependent on each individual profile wishing you peace of mind and happiness.

Trina, the markers were placed in my breast once during biopsy and then when I had my lumpectomy. They are for radiation purposes to make sure they are in the right spot. They are super tiny little things, nothing that you can feel or anything like that.

I just finished my radiation after having a lumpectomy. In a month I'm going to see my oncologist for follow up and discussing medication treatment. She did tell me it was going to be either a 5-year or a 10-year thing. I'm very concerned about this. They want to put me on aromatase inhibitors and then add in kiskali or verzenio because these two help with bone loss you get from aromatase. But I'm going to think about those because they can cause necrosis of the jaw which is a very scary thing. (My husband, passed away 2 years ago, was a dentist. He'd shown me cases of necrosis-very horrible. I now work in a dental office, and the dentist told me the same thing). So, I'm somewhat confused as well because these meds all sound horrible even though they're put in place to keep cancer away, or keep you in remission. I'm thinking of a second opinion, too. I don't understand the difference between 5 and 10 either. How do they know 5 isn't enough? Why go to 10? What about 3? This is my dilemma at the moment.

Good morning AnnaLisa I was talking to a friend she had her breast removed stage 2 no chemo no radiation or pill..I don't understand why some people don't have to take the pill..now i understand why they say cancer doesn't not kill you..but its probably that pill with all those side effects crazy...they do this to us.its like why my doctor would say your cancer free..if im doom from the horrifying, peel 😟

Pill

What pill and do u feel. I’ve been on this immunotherapy for 5 months and it finally caught up with me. I’m having the same reaction I had with the chemo. All I can say is it’s horrible. I haven’t eaten in 3 days throwing up nausea and a headache all over my body. It started Friday and I had just seen the Dr. Thursday. Also the dizziness is also getting to me. I get another infusion in 2 weeks . Hopefully I’ll be there. So how are you doing? Have u started the pill yet? Keep in touch and let me know how u do. Be well and safe. How’s the snow doing? Mary❤️

Hi Mary Z no I haven't im waiting to start radiation.next month im get a second an opinion.. Being diagnosed with cancer is so stressful.after all the treatments there still no end...though of the recurring and the 10 yr pill that breaks your body down.is so depressing...Lord JESUS please help us🙏🙏💜💜💜