Active Surveillance vs. Treatment for NHL & Mass Against Kidneys

Posted by stonyah @stonyah, Jan 21, 2025

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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Profile picture for schimmi @schimmi

Thank you so much for this detailed response; that really helps.
I was diagnosed in Feb 2019 with HER2+ breast cancer, thyroid cancer, NHL, and a groundglass on my lung. It was quite overwhelming and totally out of the blue because I've always led a healthy lifestyle, integrating all kinds of "anti cancer" foods and supplements in my diet. But being hit by an SUV (as a pedestrian) in 2012 really threw my system out of whack; I'm always wondering if that could have 'helped' to bring on the cancer.
I had chemo, then lumpectomy and radiation, and more 'chemo light'. I have chosen to watch the thyroid cancer (confirmed with a needle biopsy) and in the last PET it isn't even mentioned anymore: hurray! We are also watching the lung groundglass which has stayed stable. And I have 3-month labs and 6-month visits with my oncologist to follow the NHL. Since my neutrophils were 0.3 in Jan and I've been dealing with an infection of a lachrymal duct and I've been feeling very worn out, my oncologist put me on LevoFLOXacin for a week (not crazy about taking antibiotics, either): last pill today and a video visit with my oncologist. She also started talking about treatment with Retuxin and I came back here to find out more about it.
I had joined this board in 2023 for some research on aromatase inhibitors vs tamoxifen; I had first chosen Tamoxifen because of osteoporosis and high cholesterol, but after developing a blood clot we switched to AI. I tried all three, with problems sleeping and other side effects, and finally got off it last year - after doing a BCI test about which I learned here: thank you!!

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@schimmi, there are few members, who, like you have multiple cancer, including breast cancer, thyroid cancer and others. For example, see this discussion:
- Thyroid papillary carcinoma, breast cancer, neck lymph node cancer https://connect.mayoclinic.org/discussion/thyroid-papillary-carcinoma-breast-cancer-neck-lymph-node-cancer/

Has genetic testing ever been discussed with you?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@schimmi, there are few members, who, like you have multiple cancer, including breast cancer, thyroid cancer and others. For example, see this discussion:
- Thyroid papillary carcinoma, breast cancer, neck lymph node cancer https://connect.mayoclinic.org/discussion/thyroid-papillary-carcinoma-breast-cancer-neck-lymph-node-cancer/

Has genetic testing ever been discussed with you?

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@colleenyoung Yes, ironically I had a visit to discuss the (not concerning) results before the PET that revealed the different cancers.

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