Medical Team

Medical Team

Patients with retroperitoneal fibrosis can often experience challenges in finding providers to help diagnose and manage this condition. This is because retroperitoneal fibrosis is a relatively uncommon / rare condition and not all providers are aware of this disease and how to diagnose or manage it. 

Which providers are comfortable managing your RPF may depend on your institution? The most important thing is to find an institution that has familiarity with RPF and providers with experience correctly diagnosing and managing it. If your local institution does not have experience, then considering a referral an institution with expertise is key.

Your care team may include some of the following specialties. 

Nephrologist

RPF is not a disease of the kidney itself but since the kidney can be involved and impaired because of obstruction of the urine getting out, a nephrologist (kidney doctor) may be involved to assist in monitoring of renal function. 

Urologist

For patients with obstruction of the ureters, a urologist can assist by placing ureteral stents to help the urine get out. In patients where surgery might be needed to move the ureters, a urologist with expertise in ureteral reconstruction is needed. 

Rheumatologist

Because some of the causes of RPF are due to an over active immune system, rheumatologists may be involved in order to use medications to reduce the inflammation and over-activity of the immune system with prednisone and immunosuppressive medications. 

Interventional Radiologist

These are providers that can use advanced imaging techniques to perform procedures. For patients with RPF, interventional radiologists may be needed to obtain biopsies of the soft tissue mass, place nephrostomy tubes into the kidney through the back, or place stents in the veins (inferior vena cava or iliac veins) if there is significant narrowing causing leg swelling. 

Hematologist/Oncologist

If the retroperitoneal fibrosis is due to a secondary cause like lymphoma, solid organ cancer (breast, pancreas, etc), or Erdheim-Chester disease, a hematologist/oncologist would assist with treating the secondary cause. 

Common Treatments

Common Treatments

Ureteral Stent:

For patients with back up of the urine, a ureteral stent might be placed from the bladder to one or both kidneys, depending on which sides are involved. This can be done through one of two approaches. 

1)  Cystoscopy: This is where a thin flexible tueb with a camera is inserted through the urethra (the opening where the urine comes out) into the bladder. The tube is used to guide a wire from the bladder to the kidney(s) and then place a stent (plastic tube) that helps the ureter stay open and allow the urine to makes its way from the kidney to the bladder. 

2)  Percutaneous: This is where a needle is placed through your back into the kidney and then a stent is placed over the guidewire – from the kidney down to the bladder. 

Nephrostomy Tube

This procedure is where a needle is placed through the back into the kidney. A thin plastic tube is guided over the needle into the kidney. A bag is placed to the end of the plastic tube to allow the urine to drain out from the kidney into a collection bag that can be emptied. 

Medical Treatments

Medical Treatments

For Secondary RPF – the treatment will be dependent on the secondary cause. For example, if the cause is due to lymphoma, then treatment directed to the lymphoma are needed. 

For Primary RPF – treatment typically will involve prednisone (steroids) and immunosuppression. Prednisone (steroids) are often used initially to try to reduce the inflammation of the soft tissue mass. Doses may initially be between 30-60 mg/day and taper over several weeks/months. 

For patients with Idiopathic RPF treatments may also include one of the following medications:

• Mycophenolate mofetil (Cellcept) – oral pills

• Azathioprine (Imuran)- oral pills

• Methotrexate (Trexall) – oral pills

• Tocilizumab (Actemra) – subcutaneous injections or intravenous infusion

For patients with RPF associated with IgG4-related disease – treatment may include medications like rituximab (Rituxan) or inebilizumab (Uplizna)

Azathioprine

Azathioprine (brand names Azasan™, Imuran™) is an immunosuppressant medication used to treat various autoimmune diseases. It works by suppressing the immune system, which helps to slow down the body's attack on its own tissues and organs and reduce inflammation [1][2]. Azathioprine is a prodrug that converts to 6-mercaptopurine (6-MP), which then interferes with nucleotide synthesis, thereby inhibiting the proliferation of lymphocytes and decreasing cellular proliferation [3][4].

Conditions Treated 

Azathioprine is used for a range of autoimmune conditions, including:

• Autoimmune hepatitis

• Polymyositis (inflammatory muscle disease)

• Connective tissue diseases, lupus nephritis, inflammatory muscle disease, inflammatory eye disease (e.g., Behçet’s disease), psoriatic arthritis, reactive arthritis, and various forms of vasculitis.

• Refractory cases of skin (cutaneous) lupus like discoid and subacute cutaneous lupus

• Systemic sclerosis (Scleroderma) and overlap syndromes, particularly with interstitial lung disease or joint involvement.

• Crohn's disease (inflammatory bowel disease)

Dosage and Administration 

Azathioprine is available as a prescription pill. Your healthcare provider will determine your specific dosage based on your medical condition and history, and it may be adjusted over time. It can take about 8 to 12 weeks to see the benefits, and sometimes longer. For adults, the dose is typically started with 50 to 100 mg orally once daily, which may increase up to 150 mg/day, with the lowest effective dose used for maintenance.

Important Considerations Before Starting 

• Before beginning azathioprine, inform your healthcare provider if you:

• Take other medications, including prescription, over-the-counter drugs, dietary or herbal supplements, and vitamins. Specifically mention if you are taking allopurinol (Zyloprim™) or anticoagulant/antiplatelet medications like warfarin (Coumadin™, Jantoven™) or Plavix™.  Concomitant use of allopurinol (often used for gout) can significantly increase azathioprine toxicity, requiring a dose reduction of azathioprine to approximately 1/3 to 1/4 of the usual dose.

• Have allergies to any medicines.

• Have medical problems such as kidney, liver, or lung disease.

• You may undergo a blood test called TPMT (thiopurine methyltransferase) before starting azathioprine to assess how your body metabolizes the drug and identify potential risks of severe toxicity, such as bone marrow suppression (low blood counts). Patients with low or absent TPMT activity are at risk for severe drug-induced myelotoxicity (severe low blood counts).

Potential Side Effects 

Azathioprine can cause various side effects, some common and some serious:

Common side effects include:

Fever (when first starting), nausea, upset stomach, vomiting, decreased appetite, diarrhea, rash, headaches, fatigue, and mild hair loss [1][19][20]. Oral ulcers can occur, which may be prevented by daily folic acid and taking the medication with food [20].

Serious side effects include:

• Low blood counts (leukopenia, anemia, thrombocytopenia), making it harder to fight infection.

• Pancreatitis (inflammation of the pancreas).

• Liver toxicity (elevated liver enzymes, unusual bleeding, bruising, weakness, yellowing of skin or eyes, dark urine).

• Increased risk of infection.

• Increased risk of certain cancers, particularly skin cancer and lymphoma. Patients should limit sun exposure and use sunscreen.

• Sensitiviey to sunlight.

• Hypersensitivity reactions [20].

• Monitoring Regular follow-up appointments and blood tests are crucial while taking azathioprine to monitor for side effects and assess its effectiveness.

• Blood tests will check complete blood counts (including platelet counts), liver function (AST, ALT, bilirubin), and kidney function .

• Initially, blood counts should be monitored every 2 weeks for the first 2 months and then every 4-8 weeks thereafter, or more frequently if dosage changes occur.

• Once on a stable dose, blood counts and liver function tests are typically monitored every 2-3 months [15].

Precautions and Warnings

Alcohol

Stop or limit alcohol use while taking azathioprine, as drinking alcohol increases the risk of liver damage.

Other Medications

Be cautious with other medications, including over-the-counter drugs, vitamins, supplements, probiotics, and herbal products, as some can change how immunosuppressants work.

Vaccinations

Stay up-to-date with vaccinations. Get a flu shot every year. Discuss live virus vaccinations (e.g., shingles vaccine) with your healthcare provider before getting them, as they may be contraindicated.

Malignancy Risk

There is an increased risk of developing certain cancers, particularly skin cancer and lymphoma, with azathioprine use. Patients should be informed of this risk and take precautions like limiting sun exposure and using sunscreen.

Bone Marrow Suppression

This is a common, dose-related side effect that can lead to leukopenia, anemia, and thrombocytopenia.

Follow-up Care 

It is essential to attend all your follow-up appointments and testing. These appointments allow your care team to monitor your progress, check for side effects, and adjust your treatment as needed. If you have questions about any medications, talk with your healthcare provider.

This information is not a substitute for professional medical advice. Always discuss your specific situation with your healthcare provider.

Methotrexate

Methotrexate is a disease-modifying antirheumatic drug (DMARD) commonly prescribed for autoimmune diseases such as rheumatoid arthritis, Crohn's disease, ulcerative colitis, psoriasis, juvenile idiopathic arthritis, and autoimmune neurological disorders. It works by modifying certain immune cells, suppressing the immune system, and decreasing inflammation, which can lead to less painful, swollen joints and reduced disease activity. There are no medications that are U.S. Food and Drug Administration approved for retroperitoneal fibrosis but methotrexate has been used to help with control of the disease and reduce the need for prednisone.

How Methotrexate is Taken

Methotrexate can be taken orally as pills or given by subcutaneous injection. The oral dose is usually taken all at once, or in some circumstances it may be split into two taken over a 24-hour period (for example if the dose is 6 tablets once weekly – 3 tablets could be taken in the morning and 3 tablets in the evening). Injections may be recommended for those who don't respond to oral methotrexate or experience stomach upset. Methotrexate is typically taken once a week.

Before Starting Methotrexate 

It is crucial to inform your healthcare provider about:

• All other medicines you take, including prescription, over-the-counter drugs, dietary or herbal supplements, and vitamins.

• Any medicine allergies you have.

• Existing medical problems such as kidney, liver, or lung disease.

• Your vaccination history and any infections you currently have or recently had.

Important Considerations During Treatment

Folic Acid Supplementation

Methotrexate changes how the body uses folic acid. To minimize toxicity and side effects like oral ulcers, nausea, and anemia, folic acid (1 mg daily or 5 mg weekly) is often prescribed to be taken with methotrexate, usually 12 to 24 hours after the methotrexate dose.

Monitoring

Regular follow-up appointments and testing are essential. This includes blood tests to check kidney, liver, and blood counts (hemoglobin, white blood cell count), typically done monthly for the first three months and then every three to four months thereafter].

Vaccinations

People taking methotrexate are at an increased risk of infections. Non-live (inactivated) vaccines are generally safe, but live (attenuated) vaccines should be avoided while on methotrexate, and potentially for a period before starting and after stopping the medicine. When receiving a vaccine, it is sometimes suggested to hold the dose on the week following the vaccine administration to increase the response to the vaccine.

Alcohol

Alcohol should be limited and if possible avoided while taking methotrexate due to the risk of liver toxicity.

Sun Exposure

Limit exposure to ultraviolet light and use appropriate sun protection, as methotrexate can cause photosensitivity in some patients.

Response Time

Most people start to see benefits from methotrexate within three to six weeks, though it may take longer in some circumstances.

Potential Side Effects 

While many people tolerate methotrexate with few side effects, some can occur.

Common Side Effects

Flu-like symptoms (cough, nausea, vomiting, diarrhea, headache, fatigue), dizziness, mouth sores, elevated liver enzymes, and injection site irritation (for subcutaneous administration). Gastrointestinal symptoms like nausea, vomiting, abdominal pain, and poor appetite are experienced by 20% to 70% of patients.

Serious Side Effects

Liver Toxicity: This is a common potential side effect, and monitoring liver function tests is crucial. Patients with psoriasis, diabetes, obesity, hepatic steatosis (fatty liver) may have a higher risk.

Bone Marrow Suppression: Methotrexate can cause a lowered blood cell count, including leukopenia (low white count), anemia (low hemoglobin), and thrombocytopenia (low platelets). This is usually dose-dependent and can be managed with folic acid.

Lung Problems: Acute pneumonitis (irritation of the lungs) or pulmonary fibrosis can rarely occur. Pulmonary symptoms like a dry, nonproductive cough may require stopping treatment. Smokers are at increased risk of lung issues.

Infections: Methotrexate can increase the risk of infections, including opportunistic (less common) infections.

Malignancy: There is an increased risk of certain cancers, such as skin cancer and lymphoma. Lymphomas may sometimes regress after stopping methotrexate.

Kidney Problems: Methotrexate is cleared by the kidneys, so kidney function should be monitored. A decrease in kidney function may require a dose reduction.

Pregnancy and Breastfeeding 

• Methotrexate is teratogenic, meaning it can harm a fetus and cause fetal death or congenital anomalies.

• Do not take methotrexate if you are pregnant or if there is a chance you may become pregnant.

• Women of reproductive potential should use two forms of birth control while taking methotrexate and for at least 3 to 6 months after the last dose.

• Methotrexate may affect men's sperm quality. Men should use contraception and wait at least 3 months after stopping methotrexate before trying to conceive.

• Do not breastfeed while taking methotrexate.

When to Contact Your Care Team 

Contact your care team immediately if you experience:

• Signs of infection (fever of 100.4°F/38°C or greater, flu-like symptoms).

• Symptoms of liver problems (upset stomach, loss of appetite, nausea, vomiting, pale stool, dark urine, yellow skin/eyes, easy bruising or bleeding).

• Symptoms of kidney problems (trouble passing urine, swelling in legs, ankles, or feet).

• Skin problems (sores, blistering, peeling, or discoloration).

• Symptoms of low blood cell counts (increased fatigue, weakness, dizziness, headache, trouble breathing).

• Trouble breathing or symptoms of a serious allergic reaction (swelling of lips, tongue, throat, face, or eyelids; shortness of breath, wheezing, chest tightness, dizziness, lightheadedness, rash, hives, itching).

• Your symptoms do not improve or worsen, or you develop new symptoms.

• You are prescribed a new medicine.

• You think you may be pregnant or plan to become pregnant or breastfeed.

This information is not a substitute for professional medical advice. Always discuss your specific situation with your healthcare provider.

Mycophenolate Mofetil

Mycophenolate mofetil (brand name CellCept) is an immunosuppressant medication that can be used to treat autoimmune diseases. It works by preventing certain types of white blood cells, called lymphocytes, from multiplying, which helps to suppress the immune system and prevent it from attacking the body's own tissues. It can be taken as a capsule by mouth.

Common Side Effects 

Mycophenolate mofetil can cause various side effects. Contact your healthcare professional if these symptoms become severe .

Common side effects include:

• Diarrhea

• Nausea and vomiting

• Stomach pain

• Constipation or loose stools

• Headaches

• Fatigue or unusual tiredness

• Heartburn or acid reflux

• Cold sores or open sores in the mouth or on the lips

• Rash

• Acne

• Dizziness

• Trouble sleeping

Serious Side Effects and Risks

Increased Risk of Infection: Mycophenolate mofetil lowers your immune system, increasing the risk of infections, which can be more severe than usual.

Low Blood Cell Counts: This medication can lead to lower white blood cell counts (increasing infection risk), low red blood cell counts (anemia), or low platelet counts.

Malignancy: There is an increased risk of certain cancers, such as skin cancer, and lymphoproliferative disorders with long-term use. Yearly skin examinations and avoiding excessive sun exposure are recommended.

Liver and Kidney Toxicity: While kidney toxicity is rare at typical doses, liver toxicity can occur. Liver dysfunction may require dose adjustments.

Teratogenicity and Pregnancy Loss: Mycophenolate mofetil can harm an unborn baby, causing first-trimester pregnancy loss or serious birth defects.

Important Precautions and Warnings

Pregnancy and Contraception:

• This medication is contraindicated during pregnancy.

• Females of childbearing age must use two methods of highly effective contraception for 4 weeks before starting treatment, during treatment, and for 6 weeks after stopping the medication.

• Males should use reliable contraception during treatment and for at least 90 days after treatment cessation.

• If you become pregnant while taking this medication, inform your care provider immediately.

Drug Interactions: Do not take mycophenolate mofetil at the same time as magnesium antacids or pills, or antacids containing aluminum, as they can affect how your body uses the medication by decreasing absorption.

Vaccinations: Live virus vaccinations are not recommended before or during mycophenolate mofetil treatment.

Monitoring: Regular blood tests are necessary to check kidney, liver, and bone marrow function. These tests may be done every 7-14 days initially, then less frequently over time (typically every 8 weeks once on stable dosing).

Missed Doses/Vomiting: Ask your healthcare provider or transplant coordinator what to do if you miss a dose or vomit after taking the medication.

Medication List: Always carry a list of all your medications and their doses when visiting healthcare providers or pharmacies.

Other Medications/Supplements: Before taking any other medicines, over-the-counter products, herbal supplements, or alternative therapies, consult your transplant doctor or pharmacist [10].

Dosage 

A typical initial dose for autoimmune neurological problems is 500 mg twice daily on an empty stomach, if possible. If tolerated after two weeks, the dose may be increased to 1,000 mg twice daily. The maximum dosage is 1500 mg twice daily. Dosage may need to be adapted for kidney or liver impairment. Your healthcare provider will determine the appropriate dosage for your specific condition.

This information is not a substitute for professional medical advice. Always discuss your specific situation with your healthcare provider. 

Rituximab

What Rituximab Is and How It Works 

Rituximab (available under brand names like Rituxan, Ruxience, Truxima, Riabni) is an immunosuppressant medication. It is a monoclonal antibody that targets and depletes B-lymphocytes by binding to the CD20 antigen on their surface. B cells are thought to contribute to autoimmune diseases by producing autoantibodies, presenting antigens, activating T-cells, and releasing pro-inflammatory substances. By reducing these B cells, rituximab helps manage the autoimmune response.

Conditions Treated 

Rituximab is FDA-approved for rheumatoid arthritis (RA) and ANCA vasculitis. It is also widely used for other autoimmune conditions such as Systemic Lupus Erythematosus (SLE), Sjogren syndrome, and IgG4 related disease.

Administration 

Rituximab is typically given as an intravenous (IV) infusion. The frequency of infusions varies depending on the specific autoimmune disease being treated. Patients usually receive premedication, such as acetaminophen, an antihistamine, and methylprednisolone, before the infusion to help prevent reactions.

Potential Side Effects and Risks

Infusion Reactions: These are relatively uncommon but can include symptoms like hypotension (low blood pressure), rigor (shaking), chills, fever, hypoxia (low oxygen), angioedema (swelling), bronchospasm (airway narrowing).

Infections: Rituximab can increase the risk of various infections, including the reactivation of Hepatitis B and though very rare can be associated with a brain infection called progressive multifocal leukoencephalopathy (PML). If a patient experiences persistent immunodeficiency with recurrent infections, discontinuation of rituximab might be necessary.

Hypogammaglobulinemia: This is a reduction in immunoglobulin levels, which can further increase the risk of infection.

Other Reactions: Less severe reactions can include skin reactions, elevated liver enzymes, gastrointestinal perforation, edema (swelling), hypertension (high blood pressure), fatigue, headache, insomnia, rash, itching, nausea, diarrhea, and weight gain [20].

Important Considerations

Pre-treatment Screening: Before starting rituximab, patients should be screened for Hepatitis B and latent tuberculosis.

Monitoring: Regular monitoring of immunoglobulin levels is important. If IgG levels are too low or if recurrent infections occur, immunoglobulin replacement therapy might be considered.

Contraindications: Rituximab is contraindicated during pregnancy or lactation, and for individuals using inadequate contraception [20].

Vaccinations: Live or live-attenuated vaccines are generally not recommended during or shortly before rituximab treatment. Non-live vaccines should ideally be administered at least two weeks before starting treatment, if possible.

Communication with Provider: Patients should discuss the purpose of the medication, follow-up care, and potential side effects with their healthcare provider.

This information is not a substitute for professional medical advice. Always discuss your specific situation with your healthcare provider.

Tocilizumba

Tocilizumab, also known by brand names like Actemra, Tofidence, or Tocilizumab-anoh, Tocilizumab-aazg (Tynenne) is a medication that works by blocking interleukin-6 (IL-6), a protein involved in inflammation.

Conditions Treated 

• Tocilizumab is approved for various autoimmune conditions, including:

• Moderate to severe rheumatoid arthritis (RA) when other treatments haven't been effective.

• Polyarticular and systemic juvenile idiopathic arthritis (pJIA and sJIA).

• Giant cell arteritis (GCA).

• Systemic sclerosis-associated interstitial lung disease (SSc-ILD), where it can help slow the decline in lung function.

Administration 

The medication can be administered as an injection under the skin or as an intravenous infusion. It can be used alone or with other non-biologic disease-modifying anti-rheumatic drugs (DMARDs), such as methotrexate, but generally not with other biologic DMARDs.

Important Warnings and Potential Side Effects

 Patients should be vigilant for the following:

Serious Infections: Tocilizumab can weaken the immune system, increasing the risk of serious infections that may require hospitalization or be fatal. It is crucial to contact your doctor immediately if you develop any symptoms of infection .

Gastrointestinal Perforation: Some patients have experienced serious stomach and intestinal issues, including perforation. Seek immediate medical attention if you have a fever, severe and persistent abdominal pain, or changes in bowel habits.

Allergic Reactions: Though uncommon, severe allergic reactions, including anaphylaxis and death, have been reported. Serious skin reactions can also occur.

Liver Toxicity: Liver function tests should be monitored regularly, especially during the initial months of treatment. Dosage adjustments or discontinuation may be necessary if liver enzyme levels become too high.

Blood Count Changes: Tocilizumab can lead to low neutrophil counts (neutropenia) and low platelet counts (thrombocytopenia). Regular monitoring of blood counts is important, and dosage changes or discontinuation might be needed.

Elevated Lipids: Patients may experience an increase in total cholesterol and LDL cholesterol. Lipid levels should be checked, particularly 4 to 8 weeks after starting treatment.

Vaccinations: Live vaccines should not be administered while taking tocilizumab.

Pregnancy and Lactation: The risk to a fetus or infant cannot be ruled out, and effective contraception is advised.

Dosage

The dose of tocilizumab is dependent on the route of administration. For intravenous administration the dose is based on weight (for example 8mg/kg, or 6 mg/kg, or 3mg/kg, etc) and is given every 28 days (4 weeks). For injection into the skin (subcutaneous) it is given weekly or every other week and the dose of the injection is 162 mg per injection.

This information is not a substitute for professional medical advice. Always discuss your specific situation with your healthcare provider.

Uplizna

What is Uplizna? 

Uplizna is an intravenous (IV) medication that targets CD19, a protein found on B-cells, leading to their depletion. This mechanism helps manage certain autoimmune conditions.

Conditions Treated 

Uplizna is approved for the treatment of:

Neuromyelitis Optica Spectrum Disorder (NMOSD) in adults who are anti-aquaporin-4 (AQP4) antibody-positive. It has been shown to significantly reduce the risk of relapse in these patients.

Immunoglobulin G4-related disease (IgG4-RD) in adults, where it has been effective in reducing the risk of disease flares.

Administration 

Uplizna is given as an intravenous (IV) infusion. The typical dosing schedule involves two initial infusions two weeks apart, followed by maintenance infusions every six months. To minimize the risk of infusion-related reactions, patients are usually premedicated with a corticosteroid, an antihistamine, and an antipyretic (such as acetaminophen and diphenhydramine) before each infusion. These reactions are most common with the first infusion but can occur at any time. The administration of Uplizna requires an experienced clinician and access to medical support for managing potential severe reactions.

Important Warnings and Side Effects

Infections: Before starting Uplizna, patients will be screened for hepatitis B virus and active or latent tuberculosis [9][15]. Treatment should be delayed if there is an active infection until it has resolved.

Vaccinations: Live or live-attenuated vaccines should be administered at least 4 weeks before starting Uplizna, and non-live vaccines at least 2 weeks prior. Live or live-attenuated vaccines should not be given during treatment or until B-cell counts have recovered after stopping the medication.

Hypogammaglobulinemia: Uplizna can cause a decrease in immunoglobulin levels (IgG and IgM) over time, which may increase the risk of recurrent or opportunistic infections. Immunoglobulin levels will be monitored, and in some cases, immunoglobulin replacement therapy may be considered.

Infusion-Related Reactions: These are uncommon but can be severe. Premedication helps reduce this risk.

Pregnancy: If a mother is treated with Uplizna during pregnancy, the infant's B-cells may be depleted, which could increase risks associated with live or live-attenuated vaccines for the infant.

Other Side Effects: Common side effects reported include back pain, joint pain (arthralgia), fever, and muscle pain (myalgia) [18]. Lymphopenia (low lymphocyte count) has also been observed.

Monitoring 

Before starting treatment, patients will undergo screening for hepatitis B and tuberculosis, and have their quantitative serum immunoglobulins tested. Liver function tests (ALT, AST, total bilirubin), complete blood count (CBC) with differential, and creatinine with eGFR are also part of the pretreatment investigations. Immunoglobulin G (IgG) levels will be monitored yearly during treatment.

This information is not a substitute for professional medical advice. Always consult with your healthcare provider for personalized advice and to discuss any concerns you may have about Uplizna.

Surgical Interventions

Surgical Interventions

For patients where medical therapy is not able to shrink the soft tissue mass to allow removal of the ureteral stents or nephrostomy tubes, a surgery to move the ureters away from the soft tissue might be an option. 

This surgery is called a URETEROLYSIS. During this surgery, the urologist will move the ureter away from the fibrotic mass in order to protect it from obstruction. The intent of this surgery is to allow removal of the stent or nephrostomy tubes. 

It is generally considered best for medical therapy to be tried first before surgery.