Y-90 liver cancer treatment: What's your experience?

thank you so much for the Y90 Information, it is new to me. Is there an article (s) that you can refer me too so I can research the Y90? Thanks.

Hi! I had a great experience with Y90. The mapping was a piece of cake, worked the next day and the shoot went great. No pain at all with the shoot, a little tired the next day but was back at work the following day.

I guess the most important question is did it work? Great response. I had two cancerous carcinomas on my liver. Months one and two they shrank then my radiologist reported after month three ct that the big one was dead and the image of the little one was kind of cloudy but he thought all that was left was the bed it was laying in and at least for now i had no viable disease. Will continue to scan every three months for now, next one April 26th. Will fill you in.

My tumor markers went from 60 something down to 8.1. I'm not really sure what the tumor marker numbers mean and have read they are not always to heavily relied of for the diagnosis or cure of cancer. Maybe someone would chime in on that. I would so highly recommend the Y90 to anyone. I heard someone else call it "The Mighty Y90." Diane

Hello, how did your Y90 go? Have you had a follow up scan yet? Hopefully it revealed destroyed tumors. I have breast cancer tumors that presented in my liver. I had Y90 left lobe on 3/10 with right lobe scheduled for 4/16. Please respond with an update. Thanks

Hello @denisebrown67

I so appreciate you sharing your story about your High-Grade Neuroendocrine Carcinoma. It sounds as if you have had quite a journey to get a diagnosis and appropriate treatment.

I have also had three surgeries for NETs, however, they were not high-grade as was yours. They were in the upper digestive tract. I appreciate that you encourage others to check out pain wherever it occurs.

I would also like to invite you to post in the NETs discussion group. Here is the link, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/.

I hope that your scan in February goes well. How are you feeling now? Any continuing problems with pain and/or fatigue?

I would like to share some of my symptoms I experienced when I was first diagnosed with High Grade Neuroendocrine Carcinoma in my parotid gland. I experienced pain on the left side of my face in the jaw area. My jaw felt like it was locking up, it was difficult to open my mouth to eat, yawn or speak. I also found a small lump right below my ear lobe. My mouth hurt on the left side. I first thought it was a root canal that went bad. So my first step was to go to the dentist. I went there and they found an abscess on my upper part of my gum above my tooth 14. They removed it and said come back in a year. 2 weeks later the pain got even worse in my jaw area, so I went to my medical doctor. His first thought was parotid gland infection, so he put me on strong antibiotics for the weekend, and of course they didn't make any difference. So I went back on Tuesday and he ordered a CT scan of the area. It came back with a tumor on the parotid gland. He sent me to an ENT, they ordered a biopsy of the tumor. It was the "rare" cancer High grade Neuroendocrine Carcinoma. They referred me right away to Mayo Clinic in Rochester MN, within a month I had surgery to remove the tumor. The tumor was 2.5 centimeters. The facial nerve was sacrificed, so I suffer facial paralyzes, similar to that of someone who has has had a stroke. Fortunately, there was no spread of the cancer, the lymph nodes were clear. I endured 36 radiation (proton) treatments, and 4 rounds of chemo. The pain from the treatment and nerve damage has been severe. I continued to go back every 3 months for MRI's.

Sept.2020 I had pain in my upper spine. I never have back pain. I am a huge gardener, so I went for massage, chiropractic care and then my primary care physician. She did an xray and did see a cloudy area in my spine. With my history of cancer she ordered a CT scan, that is when they found the 2 spots on my liver and on my spine - V9. This is 3 years after my first diagnosis. She had me do a PET Scan to confirm and it showed up there as well. I was once again referred to Mayo. With an MRI they also confirmed the cancer. Next step was an ablation to the liver for the tumors, and radiation to the spine, focused cancer treatments. The ablation went fine, the radiation was rough. They planned to do 3 treatments, but I had too much pain so they did 2 instead. The oncologist feels with the severe reaction from the 2 treatment the tumor will be gone. So I go back in February for the PET Scan and MRI of my face.

If you have an unexplained pain....go get it checked. It is so important to detect the cancer early.

Hello @hypatia and welcome to Mayo Connect! I appreciate you joining in this discussion. I hope that we can be a support and encouragement to you as you go through this process. I hope that your surgery went well.

When you feel up to it, please share with us how you are feeling. Also, if you are comfortable sharing more, please share your original symptoms and any treatment that you had before the spots appeared on your liver.

I look forward to hearing from you!

Hello @denisebrown67 and welcome to Mayo Clinic Connect! I appreciate you sharing your story about your cancer treatment with the members of Connect who are just starting down this road.

If you are comfortable sharing more will you tell us a bit about your original diagnosis in 2017? For example, what diagnostic testing was used to discover this cancer; what type of symptoms were you having at that time?

Once again, welcome to Connect. I look forward to getting to know you.

Oops, the size of the carcinomas were 1.7 x 1.4 centimeters not 17 x 14. Sorry for the misinformation.

I too have have been diagnosed with this rare cancer as well. My first diagnosis (November 2017) with a tumor on my parotid gland, I had to have the gland removed and several lymphoids removed, followed with 36 radiation treatments and chemo. I had a recurrence of this cancer in November of this year on my liver and spine. They treated the liver with an ablation and the spine with 2 treatments of radiation. I pray this is end of the rare cancer.

Great to hear budbugg! If I may ask what were the size of your tumors and were they in your liver or attached to the outside? I’d do it again if i have to but hope now that mine continue to shrink. I had one 17x14cm and another a little smaller.