Seeking Guidance for Persistent Leg Issues
Hello, everyone, I hope someone might be able to offer some insights or recommend a specialist in New Zealand who can assist me. Since March 2024, I have been grappling with a developing soft tissue growth in my right groin and upper thigh region. I'm a 33-year-old female, a non-smoker with an active lifestyle and nutritious diet, and I have no children. My medical history includes a battle with metastatic papillary thyroid cancer in 2019, which involved extensive treatment, including the removal of my thyroid and lymph nodes, followed by radioactive iodine therapy. I have remained stable on thyroxine since that time. **Brief Overview of Events:** - March 2024: A lump becomes noticeable. - From April to June: An ultrasound reveals a vague subcutaneous mass. Antibiotics have no effect. - June: A fine needle aspiration (FNA) biopsy suggests potential malignancy with a C4 classification due to atypical cells and possible necrosis. It is recommended that I undergo an excisional biopsy. - July: The lump is surgically excised, but no clear lesion is identified. The pathology report classifies it as a "ruptured cyst" with the presence of giant cells and keratin remnants, but no malignancy is detected. - One week after surgery: The lump visibly returns. - August to September: Imaging indicates growth and changes from fluid-filled to solid. Ultrasound shows no vascular activity. - September: A core needle biopsy reveals fibrous tissue and giant cells but shows negative results for infection and malignancy. This is attributed to a foreign body reaction to previously applied sutures, although similar findings were noted in the surgical sample prior to suturing. **Present Symptoms:** - The lump is now solid, measuring approximately 33 x 21 x 7 mm. - I am experiencing deep, achy pain extending from my right hip to calf, particularly intense when walking or standing. - Sharp, stabbing pain occurs at the lump site. - Night sweats have been frequent, occurring more than three times weekly since around March 2024. - Ongoing fatigue has increased over the past year. - I have not had a menstrual period since December 2024 and am not pregnant. - Despite maintaining regular intensive exercise and a healthy diet, I have gained about 10 kg over the last year, which is predominantly around my lower abdomen. - My right leg has shown persistent swelling, which originated at 2 cm in June 2024 and has now increased to 4 cm larger than the left leg; this has been documented in clinical records. - My inflammatory markers, CRP and D-dimer, have consistently returned mild elevations. - Ultrasound results show no signs of deep vein thrombosis or venous blockage. - A lumbar spine MRI came back normal. - An MRI of my right thigh/groin area from January 2025 initially described the situation as “post-operative changes,” but a UK radiologist’s assessment pointed out the presence of an irregular, variably enhancement lesion. **My Concerns:** - The fact that the lesion reappeared just one week post-surgery is alarming. - There has been a notable transformation from cystic to a complex structure, ultimately becoming a solid fibrous mass, with varying appearances in imaging over time. - There is no straightforward diagnosis or reason for my continued symptoms and swelling, with explanations shifting as convenient. - The FNA indicated significant cytological atypia raising concerns of malignancy, yet the subsequent pathology dismissed these findings, and proper immunohistochemistry panels were not conducted to exclude malignant possibilities. - Surgical pathology indicated an absence of cyst lining or identifiable foreign bodies, casting doubt on the accepted diagnosis of "ruptured cyst with foreign body reaction." - My case was reviewed by a Sarcoma Multidisciplinary Team, but this largely consisted of reassessing original slides without new tests or insights, which does not constitute a proper second opinion. I feel completely trapped in this situation. Despite raising my concerns multiple times, the response has consistently been that everything is merely “scar tissue” or “non-threatening,” dismissing the recurrence of the lesion, systemic symptoms, and troubling imaging and biopsy results. I have consulted my general practitioner over a dozen times and have received referrals to various general surgeons without resolution. I even paid $250 for a private sarcoma expert who, without reviewing relevant images or reports, confidently told me that I do not have sarcoma because of his expertise, only to leave me frustrated and financially burdened. In total, I have gone through **six ultrasounds, two MRIs, and two biopsies** without any definitive answers. My diagnoses range widely from ruptured cyst to seroma, sciatica (absurd given I have no back pain), lymphedema, and of course, the oft-used explanation of **anxiety**. It seems peculiar that all these “conditions” are unrelated yet occur simultaneously. Beyond a course of physiotherapy and a referral to a pain management clinic, where gabapentin was suggested, there has been no coherent plan or path forward. The past year has been filled with discomfort, anxiety, and dead ends. Living in Auckland, I navigate the complexities of New Zealand’s public healthcare system, which, while efficient in emergencies, can be quite cumbersome for intricate or ambiguous health issues. General practitioners gatekeep access to specialists in both public and private sectors, and while mine has been proactive, there are obstacles in getting referrals approved, leading to prolonged waits and starting anew with each new specialist. I have opted for private ultrasounds due to their relatively quicker availability, but the pursuit of other tests has been challenging. I have expended thousands of dollars on GP visits, time lost from work, imaging studies, and private biopsies due to a public hospital specialist’s refusal to proceed with necessary testing. Now, the clinic is withholding pathology materials, making it impossible for me to seek a second opinion abroad. I feel as though I’ve hit a dead end in my quest for answers. I have lodged formal complaints with the hospital, requesting further evaluations, but these have all been denied. I reached out to the Health and Disability Advocacy Service, which took a frustrating ten days to respond, offering minimal assistance—it seems I am left drafting letters and suggested filing a complaint with the Health and Disability Commissioner, which could lead to lengthy delays without assurance of resolution. Recently, a small glimmer of hope surfaced from my endocrinologist, who has overseen my thyroid cancer follow-ups. He expressed concern about the possibility of **Non-Hodgkin’s lymphoma** being linked to my leg swelling and my elevated CRP levels. He ordered an abdominal CT scan to investigate for potential lymph node involvement, but that request was made in February, and I am still awaiting the scan. So again, I reach out to the community: **is there anyone who can assist me?** I desperately need a medical professional who will examine my case comprehensively and connect the disparate aspects of my situation instead of repeating the previous doctors' narratives. I feel trapped in a pattern of confirmation bias and diagnostic inertia. A knowledgeable specialist in New Zealand who listens and considers options beyond the automatic “scar tissue” diagnosis would be invaluable. I am more than willing to provide imaging, reports, or pathology documents if that would be helpful. Any recommendations or thoughts would be greatly appreciated. Thank you for taking the time to read my story!
Answers (1)
4/3/2025, 1:41:06 AM
OpenHealth AI
Thank you for sharing your detailed and concerning experience. It's understandable to feel overwhelmed and frustrated by the sequence of events and lack of definitive answers regarding your condition. Let's address your current situation and outline some potential actions you can take to find clarity and support.
Main Points: You have a recurring lump in your groin and upper thigh, which has been evaluated multiple times, yielding inconsistent findings and persistent symptoms such as pain, swelling, and unexplained systemic issues. The recent mention of Non-Hodgkin’s lymphoma is concerning, and timely evaluation is crucial.
Explanation: The complexity of your medical history, particularly following past cancer treatment, adds to the urgency of your situation. While the earlier biopsies and imaging did not find malignancy, the recurrence of the lump and your current symptoms may warrant more thorough investigation. Non-Hodgkin’s lymphoma can sometimes present with lymphadenopathy or other systemic symptoms, which your endocrinologist seems to be considering.
Next Steps:
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Follow-Up on CT Scan: Since your endocrinologist ordered a CT scan to investigate potential lymph node involvement, it’s vital to ensure this scan is conducted as soon as possible. Reach out to the clinic to inquire about the status of this scan and express the urgency due to your symptoms.
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Seek a Second Opinion: Consider requesting a referral to a comprehensive cancer center or another expert specializing in sarcomas or hematology-oncology. Look for a multidisciplinary team that includes specialists trained in rare conditions, as they may provide fresh insights and further diagnostic methods.
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Document Symptoms and Changes: Keep a detailed log of your symptoms, including pain levels, any new developments, and how they correlate with your activities. This information can be invaluable when discussing your case with new specialists.
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Advocate for Comprehensive Testing: In your discussions with new healthcare providers, request that they consider additional tests, such as advanced imaging (like PET scans) or more specific biopsies, which might provide clearer evidence of what is occurring in your leg.
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Engage with Patient Advocacy Groups: Connecting with organizations focused on rare health conditions might help you find additional resources or specialists. They often have networks that can guide you to professionals with expertise in unusual cases.
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Consider Pain Management Options: While waiting for further evaluations, discuss your pain management with your current provider. Options might include medications, physical therapy, or possibly other interventions that can help alleviate your discomfort.
Support and Reassurance: It’s important to recognize that your concerns are valid, and navigating the complexities of your health situation can be incredibly challenging. Please remember that you deserve attentive care and a thorough exploration of your symptoms. By proactively continuing to seek care and connecting with knowledgeable professionals, you can work towards finding the answers and relief you need. Don’t hesitate to advocate for yourself—your health and well-being are paramount.
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