Many patients with TGCT will undergo surgery at some point in their journey. Patients throughout the TGCT Support communication platforms have shared their experiences and advice. Below is a list of tips and advice based on their experience collated by TGCT patient, Nadina Hood.
This list is not intended to substitute qualified medical advice. Please consult your healthcare provider for any advice relating to surgery and recovery.
A Patient's-Written Guide for Preparation Before the Operation:
A shower chair and toilet seat riser may increase independence earlier in the recovery;
Tegaderm and other waterproof bandages may be useful to cover the incision site when you shower;
Similarly, a waterproof cast cover for showers to keep the bandage dry may be used as an alternative;
A leg elevation pillow may reduce swelling after the operation;
A source of additional protein is helpful for healing (ENSURE brand protein drinks for example). Protein plays an important role in tissue repair and recovery. More muscle and protein before operation will help recovery after!
A claw/grabber is helpful for grabbing items out of reach.
A resistance band may be used as a leg lifter to make movements easier. A resistance band may also be used for completing physiotherapy exercises afterwards.
If you live alone, make sure you have access to quick and easy meals. Prepare ahead and freeze. One patient described the “just-add-water” mashed potatoes like a “hug for the soul.” Ask your support network if they would participate in a “meal train.”
Make sure you have ice packs or even bags of frozen peas (don’t eat after!) ready.
Some patients use cryocuffs and other ice machine devices (e.g., Polar) after surgery. These circulate cold water or ice and help with inflammation and swelling.
Think about footwear and clothing for after the operation. Slip-on shoes with backs tend to allow easy application without risk of them slipping off.
Wear loose and comfortable layers which will not irritate the site of the operation and don’t require a lot of effort to take on/off.
Think about the space where you will be spending the most of your time after the operation. Tidy up, put things in easy to access places (e.g., books, remotes, clothes, toothbrush, toothpaste). Make sure you have enough pillows and blankets. It makes a big difference to know you’re settling into somewhere comfortable and clean.
A patient recommended the book Prepare for Surgery, Heal Faster by Peggy Huddleston for those book worms!
Work on quad strength before and after the operation. The more muscle and strength you have prior, the better you are after.
Build your village, let people know what you're going through so that they can be a resource for you.
For knee and hip patients, trim your toenails. It will be a while until you’re able to do that on your own again. If allowed by the hospital, consider painting your toenails before the operation. One patient mentioned, you spend a lot of your time staring at your feet, it may be nice to have them look nice (please note: some institutions will ask patients to remove polish, consider asking the hospital during the pre-operative appointment their policy).
A Patient's-Written Guide for After the Operation and Beyond:
Pain and nausea are a common experience post-operatively. Medications can be given in the hospital to help manage both. If you are in pain or nauseated, tell the nurses; If either or both persist, you can ask to take the medications home with you.
You may also be constipated from the anaesthesia. If so, consult your healthcare team or take over-the-counter laxatives and/or stool softeners. For those in need of suggestions, Miralax is awesome!
Discuss pain management strategies with hospital staff (e.g., nerve block).
Ask your healthcare provider if you can have ice to help reduce swelling and pain associated with it.
If you’re showering at the hospital, put a hospital towel on the floor so you can wash the soles of your feet.
If you’re into gore of your own making, sometimes the surgeon will take pictures of the tumours if you ask nicely ahead of the operation.
Consider sitting in the back of the vehicle on the ride home. Use your pillow to prop your leg up on the back seat during your journey.
It is always better to use a mobility assistance device (e.g., crutches, walker, cane, wheelchair) than it is to limp. Limping puts stress on other areas of the body and may cause compensatory pain. It's okay to need crutches at any point in your journey! You may not need them at one point and you may feel you are regressing by using them. Give your affected limb a break, it will support you for it.
Elevate (above your heart) and ice your leg. Some patients recommended ice machines such as Polar for maximum icing capability.
If you go out, consider the distance of the chair off the ground. Hip patients warned to for booths and avoid barstools for maximum comfort!
Have your family/friends who visit ask to record the updates from the healthcare provider so you can listen when you are feeling better.
Discuss with your healthcare provider whether you will be weight-bearing after the procedure and how much weight is appropriate at each stage of recovery.
Eat/drink additional protein.
Consider alternating acetaminophen (paracetamol/Tylenol) and Advil (ibuprofen) to reduce pain and swelling. Keep in mind the maximum total daily dose and ensure you do not exceed it; Other medications given post-operatively may include acetaminophen. Discuss with your healthcare provider post-operative medications.
Attach a little bag to your walker to carry a few things, like bottled drinks, from room-to-room. If you’re on crutches, a backpack serves the same purpose.
If it’s snowy or icy, it is safer to have ice grips for your crutches. These can generally be found on Amazon or any medical equipment store.
Some literature suggests that early physical therapy improves outcomes. Ask your healthcare provider for any movement restrictions and for a referral to a physical therapist. Most patients found physical therapy very helpful for their recovery, under the guidance of their healthcare provider.
Slow and steady wins the race. Your body and mind may not always be in the same place during recovery. Take it easy and have reasonable expectations for yourself.
A tip for elevating your lower limb, prop the foot up on a towel or a 2 Liter plastic bottle. This allows knee extension compared to laying your leg flat.
Once you have recovered enough to leave home, consider bringing a large ziplock (sandwich) bag with you. If your limb swells while you’re out and about, most cafes will give you ice if you buy a drink. You can fill the ziplock bag with the ice!
The most important tip patients conveyed, however, is to be kind to yourself! For some, surgery is a smooth linear process. For others, it’s harder than you’d imagine so be gentle on yourself. Give yourself more time than you expect. Surgery is as much a mental recovery as a physical one. We are all in a rush to get better, understandably. You got this, we are all here to help!
tips for reducing tgct burden
Many of the above tips can be used regardless of where you are in your journey! Here are some additional general tips
Elevate (above your heart) and ice your leg when it is swollen. Some patients recommended ice machines such as Polar for maximum icing capability.
A tip for elevating your lower limb, prop the foot up on a towel or a 2 Liter plastic bottle. This allows knee extension compared to laying your leg flat.
Warm compresses, heating pads, or warm baths can relax stiff tissues and improve blood flow. But these can increase swelling too! Consider trying these techniques when you are stiff and not swollen.
Work on strength training, when feasible. Supporting muscles help absorb load (e.g., strengthening quads for knee pain, rotator cuff for shoulder) and support joint stability.
Low-impact activities like stretching, chair yoga, tai chi, or aquatic therapy can help maintain mobility without overexertion. Patients often mention that low-impact activities like swimming are helpful ways to exercise. Don't knock chair yoga til you try it!
If you go out, consider the distance of the chair off the ground. Hip patients warned to for booths and avoid barstools for maximum comfort! Use/bring your own cushions or supports to reduce pressure on painful joints.
Adjust chairs, desks, or kitchen setups so the joint isn’t constantly strained.
Alternate between sitting/standing, and don’t stay in one position too long.
Don’t hesitate to use canes, walkers, or wheelchairs when you need them, these are tools for independence, not limitations. It is always better to use an assisted device instead of limping through pain.
There are pillows and mattresses designed for pain relief (wedge pillows, body pillows, or memory foam), consider looking into what works for you! Many patients with lower limb TGCT prefer keeping a pillow between their legs.
Some patients prefer to stretch in the morning to help with stiffness. If you wake up stiff, consider some light stretching.
A joint-specific brace (e.g., knee sleeve, wrist splint, ankle brace) can stabilize the area and reduce strain. Patients often report that soft gel braces are more helpful than restrictive ones.
Consider alternating acetaminophen (paracetamol/Tylenol) and Advil (ibuprofen) to reduce pain and swelling. Keep in mind the maximum total daily dose and ensure you do not exceed it. Discuss with your doctors if these medications or others are right for your situation and the acceptable duration of treatment.
Gels, creams, or patches with menthol, lidocaine, or NSAIDs can provide local relief with few systemic side effects.
Reach out to your support system! Join a support group, we are here to help. You aren't in this alone.
Bring ziplocks with you for long car rides or travel. You can fill them with ice at pit stops!
Pace yourself! Spread out tasks, take breaks before you need them, and give yourself permission to stop. Let others know where those limits are so they can support you.
Break household chores into steps. For example, instead of cleaning the whole kitchen, do one counter at a time and take breaks.
Breathing exercises, music, journaling, audiobooks may help shift focus away from pain and helps manage pain spikes by calming the nervous system.
Meet your body where it is and celebrate the milestones. If that means a walk around the block, cooking dinner, or just making it through the day, that is where you are today and it is worth celebrating. Acknowledge what you accomplished, even if small.
At work, school, or events, requesting accessibility isn’t a burden, it’s your right. Meet your Human Resources or Reasonable Accommodation Office and let them know what's happening.
