I’m new to this forum so I just wanted to share a little bit about me and my journey so far. I had been experiencing severe, devastating diarrhea, off and own since about September of 2023. I went to my gastroenterologist who has been treating me for Irritable Bowel Syndrome a number of years. He ran all the standard tests; endoscopy, colonoscopy, and home stool study to determine if there was any infection. All tests came back negative.
In September I went back to my gastroenterologist because the diarrhea had returned with a severity I couldn’t handle. During this visit I, for whatever reason, asked him if I could possibly have cancer. He said he didn’t think so but ordered a ct scan to be sure. On September 13, 2024 he called me to say that the scan showed 4 lesions on my liver. ( one large tumor and four smaller ones). He then ordered an mri. He called me up to tell me that the lesions were cancer and that it had metastasized. Needless to say, I was devastated. He then ordered a biopsy on September 26 which, to date, I never got the results. Apparently they sent it to the Mayo Clinic for further testing.
After waiting weeks for the results I asked my oncologist ( I’m a six year breast cancer survivor ) if I could just be referred to a liver specialist. In the meantime I had a brain scan and a pet scan which showed no cancer anywhere else except in the liver. That was on a Friday and I saw the liver specialist the following Tuesday. When I met him he explained to me that my tumors were growing in leaps and bounds and hospitalized me immediately. It was urgent that something be done to halt the growth immediately. That something was liver chemo ablation and I stayed 9 days in the hospital but the tumors were shrinking. The plan was to rescan in three months, have Ketruda treatment and, if all goes well, we would consider surgery.
Well, around mid December I experienced a sharp pain in my right side for about three days. I called the doctor and he ordered another ct scan. The results showed that the tumors stopped shrinking and I had developed two new ones. Also the Ketruda’s side effects were horrible. I developed a rash on my hands that have now turned into what looks like leprosy. I saw him two days ago and he opted to stop the Ketruda and it wasn’t working anyway. He now wants to do Y90 treatment next so praying this works for me. I am scared but I’m trusting God for the outcome. Glad I found this group!
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Msteeniebaby25
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Welcome to the group. I am so glad you have joined us. I was lucky enough to find Blue Faery and Andrea several years ago when my husband Jimmy was diagnosed with HCC. This group was such a Blessing during his illness. Since his passing in October of 2022, I've stayed on to volunteer as Blue Faery's Community Ambassador and a moderator for this group. Liver Cancer Advocacy and sharing my Jimmy's story is my passion. I'm so sorry that you had such a problem getting diagnosed. Unfortunately with HCC that is often the case, even if the patient has risk factors that should be red flags. As a result, it's often in advanced stages when it is discovered. I'm afraid I don't have any experience with Keytruda but Jimmy was on Opdivo which is a similar immunotherapy treatment. Jimmy couldn't have Y90 treatment because his liver was too damaged from cirrhosis and Hep C which he had prior to the cancer. I am glad that they do have a treatment in mind to try next. I hate to hear about your horrible rash. Jimmy was on Lenvema and it caused horrible sores in his mouth . The liver disease itself caused horrible sores on his arms that he'd scratched until they'd get infected. I'd wrap his arms up like a mummy with horse wrap so he couldn't scratch them at night. So do you know if your liver cancer is HCC and primary to the liver or did it develop from the breast cancer? If you have any questions please don't hesitate to ask. I'll keep you in my prayers that the Y90 treatment helps shrink and slows the tumors. Sharon ❤️
I echo DancingEyes63 -- welcome and I'm glad you found us. I'm so sorry about your diagnosis. It's very interesting that they sent your biopsy to the Mayo Clinic for further testing. That tells me that whoever is/was treating you isn't sure which type of liver cancer it is. While HCC is the most common one, there are other types too.
If you haven't already, I would get these answers:
1. Get an actual diagnosis of the exact type of cancer: primary or secondary. Confirm it's not secondary liver cancer (from having breast cancer before).
2. If it's primary liver cancer, confirm if it's HCC (most common), cholangiocarcinoma (rarer), or another type of cancer that started in your liver. (e.g., neuroendocrine tumors)
3. Get a second opinion. We can assist with getting you a free one.
4. Confirm the stage of the cancer. The doctor said it metastasized (stage 4)--to where? Lymph nodes? Lungs? Bones? Maybe it hasn't.
5. If it is stage 4, ask about clinical trials now. Don't wait. We have a great clinical trial tool here: bluefaery.org/clinical-trials
Thank you so much for the information. I am Stage 3 primary to the liver. No cancer detected anywhere else. My oncologist is requesting a second opinion and referral to a dermatologist.
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My husband has been battling liver cancer since 2016
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