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Active Surveillance vs. Treatment for NHL & Mass Against Kidneys
On Nov. 22, 2024 my lower back was hurting. I visited an ER. I was admitted. I had to stay for three days. I was told a 6.5 cm mass was leaning against my kidney preventing it from functioning. They said that the kidney had been rendered too damaged to even try and get it back up and running. They refused to even put a stent in.
After my second opinion at Karmanos, I was told that there is no way to literally "remove the mass." On December 2, 2024, I was diagnosed with low-grade B-Cell Non-Hodgkin follicular Lymphoma (NHL). 😔 The doctor recommended IMMUNOTHERAPY and/or chemotherapy, radiation to shrink the mass. I refuse to accept this diagnosis.
Going back, a little over a year ago, I had dermal fillers placed in my nose. The doctor overfilled. Immediately after the procedure, my face and neck got really dark. Ultimately, the doctor used Hyaluronidase to remove the filler. I insisted that there was still remaining filler. I could not only still feel the filler but had pictures to prove it. The doctor did not agree. He thought that pictures could be deceptive.
Back to the present, I visited a urologist on Thursday, December 26, 2024. I received a stent in my kidney on Friday, January 3. 2025. I am thinking that this will give me time to shrink the tumor on my own. I have been using soursop, black seed oil, and apricot kernels. I went back for a CT/PET scan. It stated the mass was under 5 cm. It was staged at stage I-II. Also, I have noticed that the darkness on my face and neck is subsiding. I also had another biopsy (where I learned that the doctor allowed a resident to complete after telling me that he would be the one to conduct the procedure but this is something I cannot change...so I am choosing not to dwell on it). I truly think that the dermal fillers somehow traveled to my blood stream and formed a granuloma.
The oncologist at this last appointment (after receiving the biopsy results) still insisted on rituximab and potentially chemo. He did not give me the biopsy results on paper (which I had previously asked for) until I was walking out of the door. When I got home, I read the report. I noticed two key terms: “microscopic examination of core biopsy show vaguely modular, atypical lymphocytic proliferation…” and "clinical correlation recommended."
My third opinion will be at The University of Michigan Rogell Cancer Center on February 13, 2025.
Has anyone ever had a mass that was leaning against the kidney or another vital organ and chose to pursue Active Surveillance?" How did it go?
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Hello @stonyah and welcome to Mayo Connect. I can understand your fear of beginning treatment. Getting a third opinion at the University of Michigan is a good idea. I live in SE Michigan and I am also seen at U of M for a different type of cancer.
I would encourage you to post on Connect's Kidney Cancer support group. In this group, you can share these experiences with others who can then share their experiences with you.
Here is a link to one of those discussions,
--Wanting to Connect with Kidney Cancer Patients
https://connect.mayoclinic.org/discussion/wanting-to-connect-with-kidney-cancer-patients/
How are you feeling, @stonyah? Are you fatigued or do you have other symptoms?
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1 ReactionI must congratulate you for being assertive about your care - and following up on your suspicions about what the causes may be. It sounds as if you may have had very suboptimal care to-date - starting with the person that did the dermal fillers and then tried to remove the filler. Wow! How absolutely awful!
I received a diagnosis of stage 4 low-grade NHL in October 2024. Watch and wait was recommended. That lasted for 3 months when, during a follow-up scan, it was determined that one of my enlarged lymph nodes was putting pressure on a bile duct near my liver. A week later, I started immunotherapy without chemo (Rituximab). I will have weekly infusions for 4 weeks and then every 8 weeks. The first infusion was a bit difficult, but the second went smoothly. Since the low-grade is generally not curable, the goal is to keep it under control. Chemo is often used in conjunction with the Rituximab, but it was discovered that I have a somewhat rare mutated gene that makes me not a good candidate for chemo. Apparently, the low-grade can transform to fast-growing, which is curable -- but not always cured. I have a complete blood panel prior to each infusion and will have scans every 3 months for at least some time. I am at an excellent medical facility but it did take some time to get a diagnosis with various scans, blood work, biopsies, and bone marrow biopsy. My main symptom prior to diagnosis was an enlarged spleen. Watch and wait seems a bit counter-intuitive; however, if the cancer isn't curable, it seems logical to hold off negative side effects for as long as possible. Staying strong and healthy is a priority so that I can withstand whatever treatment options might give the best outcome down the road. In addition to praying, that is about all I can do for myself. I reviewed my list of vitamins with my medical team to ensure I'm not doing anything counter-productive.