CommunitiesBreast Cancer Clinical TrialsShould I Join a Clinical Trial for My Breast Cancer Radiation Treatment?

Should I Join a Clinical Trial for My Breast Cancer Radiation Treatment?

LY

Community Member

a year ago

My radiation oncologist says I’m in a “gray area” for how to proceed with radiation. We could go with the standard breast/armpit or the more comprehensive breast/armpit/regional nodes (internal mammary and clavicles). However I qualify for a clinical trial in which I’d be randomized into one of those groups. I’m very interested in helping advance the science, but I’d also like the best chance of survival without recurrence. Anyone have any thoughts or experience with this?

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26 comments
Comment
accepted answer

Accepted Answer

This sounds like a thoughtful decision to weigh carefully with your medical team. Clinical trials can offer access to cutting-edge treatments while contributing valuable data to help future patients, though the randomization aspect means you wouldn't choose which treatment approach you receive. Many patients find it helpful to discuss the specific trial details, potential risks and benefits of each radiation approach, and how the trial results might inform your care with both your radiation oncologist and perhaps a second opinion if that would provide additional clarity.

3+ patients found this helpful

EG

Community Member

6 months ago

Always do more comprehensive. Never want to regret you didn’t do enough

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KB

Community Member

6 months ago

I can only echo what Edna said. My feelings exactly.

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LY

Community Member

6 months ago

That’s what I decided to do.

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SM

Community Member

6 months ago

I had my left breast removed and nine nodes under the arm

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KB

Community Member

6 months ago

My breast metastasized to the bones. Level 4. No cure. So i asked to be put in a study as i know i would not have money for treatment. I'm on letrozole and IBrance. Oral. I live alone and family is gone. I have a sweet little dog that I have arranged for a family to take. I'm really doing well. I have spoken to my Dr. About physician assisted death. She said I was nowhere near that but I think I might need that before she thinks I do and Europe has nice offerings.

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KB

Community Member

6 months ago

Kellie, If you are doing really well just live for now. Take it day by day. Love and prayers for you.

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KB

Community Member

6 months ago

I was diagnosed with breast cancer then it had metastasized into the bones. Letrozole and ibrace. I'm doing really well for past three years. Side effects..diarrhea.. Take imonium ad Take oc for stomach. I'm 73.

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KB

Community Member

6 months ago

At the onset I asked to be put into a clinical study as i only have Medicare. I hope Trump doesn't cancel studies as he has stopped research.

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PR

Community Member

6 months ago

I am afraid we will see cancer research stall as funding has def been cut - todays news

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PR

Community Member

6 months ago

Sadly all evidence supports funding has and will be cut by DOGE. All the research that has saved so many lives will be in vain….

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KM

Community Member

6 months ago

There are stand up for science rallies across the US on Friday to support the great contributions NIH scientists and other government scientists make to our lives. Check the website for a rally in your area. In the DC area, the rally is in front of the Lincoln memorial from noon to 4pm

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VM

Community Member

6 months ago

Kellie B, I have MBC, too. I started on Ibrance with letrezole for 3 years. Then, Ibrance with fluvestrant for 6 years. Then Kisqali with exemestane for a year. I live day to day, happy to wake up and give thanks. You can do this.

KB

Community Member

6 months ago

Thank you. I'm in a bit of a bind as my Ibrance had to be renewed in Dec. I sent the forms in but they apparently didn't get them. They didn't renew it and I've been off it for several weeks. I hope I can remedy this

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HE

Community Member

6 months ago

My dr wants me to have the infusions for my bones and I’m a little reluctant as the side effects are scaring me

CS

Community Member

6 months ago

Helene, I had Zometa 4mg a tear ago. Did ok. Others recommended tylenol couple days before with Claritin. Went fine. Having a second in couple weeks. The Letrozole causes osteoporosis and am trying to stave off....

VM

Community Member

6 months ago

Helene, I've been on xgeva for my bones for 9 years. It's a shot every 3 months. I've not had any side effects so far. My oncologist has changed it to every 6 months because I have been on it so long. Ask your oncologist about it instead of the infusion.

SB

Community Member

6 months ago

Virgina M… are you on Xgeva for your bones to counteract a side effect from Letrozole? I’m solely on the anti-estrogen treatment to shrink my tumor, now I am feeling joint & inflammation pain. Want to stay on Letrozole because it is working against the development of my tumor, but I do not want to suffer the bone density lose that I had prior which I helped correct with an Algae calcium supplement. Are there side effects to Xgeva? Just looked it up, states: Usage for bone cancer to help rebuild the bones, yet a ton of side affects which include bone pain & shortness of breath which I already experienced from the MRI contrast dye. Confused.

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LB

Community Member

6 months ago

I’m on my first line of treatment since this second recurrence in 2023. I’m taking Kisqali and Letrozole, and get the XGEVA injection, to strengthen my bones, monthly. I do tend to be a little sore the day after the injection, so I usually take that day to just rest. Other than being sore, I haven’t had any real side effects. Praying for everyone on here🙏🙏

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BJ

Community Member

6 months ago

I followed a clinical trial. TNB stage three, cancer free since 2022. My plan was NIH plan. Taxol, keytruda, then cistol,doxy and Keytruda. After blood work clearance had double mastectomy. Several nodes in right armpit removed. Healed, went for radiation 5 days for a month. My radiation was targeted for the upper most ribs along with my right chest "breast" area and a bit down right before the liver. Then re started immunotherapy. 4 months later had hysterectomy. Restarted keytruda. Couldn't finish all 9 segments of keytruda cause it impede with the hysterectomy and inflammation of liver.

RP

Community Member

6 months ago

I actually have went with science. I’m in a trial where I am least likely to have great results. But the doctors will watch me more closely for the spread of cancer. And if any, I’ll be out of the trial and start the common protocol for my type of cancer. It’s a risk I’m willing to take for future patients.

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BJ

Community Member

6 months ago

If you don't mind me asking, please be honest if don't want to, why do you think your less likely? I strongly suggest for health recovery and keeping the neutrafil count up, do the organ meat and juicing especially with beets. I hate both but my spouse bought an insta pot, he tricked me, said it was for roast beef, and I ate cow heart gloriously and happily like a stew. Now I love it. DON'T DO KIDNEY, your house will smell like urine for a week! My blood work came back up too well, they thought they had the wrong labs. Organ meat does greatly assist chemo and non chemo. It's cheaper, higher in Co Q 10. Mind you I used to hunt, eat lots of game meat not the organs. Don't ask just a thing 😂. Even if it's just simple walks keep walking. Know when to rest. I did this till I was completely done with everything, surgeries and all. I continue it still less frequently cause beets blaaaah .It greatly assists. I still came out of chemo looking like a live care bear with the red heart. I was swollen to where my eyes were slits after the doxy. Was in a wheel chair for one week due to inflammation which was my final week of chemo. When I first started chemo I was healthy, strength training, sprinter, did old baldy summit. Went hiking trails 1 week prior to officially diagnosed. I was a smoker of cigarettes and social drinker. I vape now and still social drinker. I was told by other survivors and ones that became metastatic where it hit their bones to not get into the weeds. Maybe weed, CBD but mentally. It's highly damaging. If you're alone on this journey, or have a wheel house of support,do things that are outside of cancer, nothing related, give your mind rest. Even with folks in your wheel house let them know, hey cancer talks happen on my terms . Let them know you need that metal break. It does help significantly.

SH

Community Member

6 months ago

Kellie, never give up! God got you

PO

Community Member

6 months ago

I am in agreement with you. Good luck

LM

Community Member

6 months ago

Kellie B the nurse navigator or the social worker at your cancer center should help with getting you help!

SB

Community Member

6 months ago

Going all out is not always the best. No one can speak for that in another’s case. Your current health issues must be addressed. I choose to not have a stroke, will not promote that situation with surgery & certain treatments. Good caring healthcare needs to be just that. There are other alternatives.

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