Hello everyone,
My name is Halil, and I’m 51 years old.
I’m joining this community to share my journey with kidney cancer and find support. Here’s a summary of my story:
- **2010:** First kidney cancer diagnosis—clear cell renal cell carcinoma (ccRCC). Underwent a partial left nephrectomy. Nuclear grade 3 (Fuhrman). Tumor size: 2.9 cm. No capsular breach. Healthy resection margins.
- **2019:** Diagnosed again with ccRCC, classified as pT3a, grade 3. Had another partial left nephrectomy. Tumor size: 2.4 mm. Initial stage: T3aN0M0 (Stage III). That same year, a retroperitoneal lymph node (11–11.6 mm, left primitive iliac) was detected but remained stable until 2024.
- **Lung nodule:** Present since 2018 (5 mm in 2019), it fluctuated in size (15 mm in 2025, SUVmax 4.9). A bronchoalveolar lavage (BAL, 04/02/2025) suggested a benign cause (bronchocele/hypersensitivity pneumonitis—no cancer cells or infection). A bronchoscopic navigation is scheduled for late May to confirm.
- **2025—Lymph node:** The 2025 PET scan showed intense hypermetabolism in the lymph node, suggesting metastasis (N1). My urologist confirmed that its appearance aligns with metastasis, not infection. He explained that its stability (2019–2024) might indicate tumor dormancy, while the hypermetabolism suggests recent activation. He finds this reassuring, as it points to slow progression.
- **Treatment:** A lymph node biopsy was ruled out (open surgery too risky, potential complications). Stereotactic body radiation therapy (SBRT) is planned for 04/16–18/2025 to treat the presumed metastatic lymph node.
- **Current stage:** T3aN1M0 (Stage III), pending bronchoscopic navigation to confirm no lung metastases (M0).
I’m quite stressed about the uncertainty surrounding the lymph node, even though my doctor finds the slow progression reassuring. I’d love to connect with others who’ve faced similar situations (ccRCC, late recurrence, SBRT, etc.) to better understand what lies ahead and manage my anxiety. Thanks in advance for your support!
*P.S.: I’ve always been asymptomatic.*
Hi Halil LeParrain73 and welcome to the Macmillan Community but so sorry to hear about your ongoing story..
Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.
This Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)………… so if you care to have a look through this link Cancer Specific Groups you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.
Have a look through the LIST above and once you find the support group(s) for your cancer type(s)....... click on the link and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. Getting in touch from outside of the UK you can contact us 7 days a week 8am-8pm (UK time) on: +44 207 0912230 email or live webchat
Do get back to me if you need further help navigating the community.
