Hello, I had lymph nodes removed in my groin in a September operation. I was told that I might experience swelling in my leg pretty much for the rest of my life. I've had two episodes of swelling in my thigh from knee to groin twice since then. I found it quite alarming at first since I was recovering from surgery the first time and had just started immunotherapy the second time and thought each incident was due to infection or adverse effects and it turned out each was the possible outcome of swelling due to the lymph node removal.
Now that I am getting used to the idea that this will happen from time to time, I'm wondering if anyone else has dealt with this and if you have any strategies for keep this under some kind of control?
I've been advised to sleep with my leg elevated and perhaps use some kind of compression bandage/sock. I have put on a compression bandage today and I found that it helped immediately.
I had a complete lymph node dissection in my left inguinal (groin) region. I was made aware of lymphedema becoming part of my life by the main surgeon. How could your medical team not expect lymphedema with all the nodes removed?
A lymphedema assessment is well worth it, and its unfortunate you were not able to get this assessment at the beginning / after the healing had completed. I had to wait 3 months to be assessed and be fully healed. This way the therapist can rule out and distinguish healing swelling from lymphedema.
I use manual lymph massage, compression stocking and shorts to control the swelling.
Heat and humidity also bring on swelling that add to discomfort, so choose cooler parts of the day to walk or cycle or what other sports you enjoy.
Diet and keeping a healthy weight help control the level of edema, and this can be challenging as well for many reasons. Like many, my weight fluctuates at different times of the year. I recently joined the local sportsplex, and use the recumbent bike and walking track to increase exercise level and improve fitness level / weight maintenance.
Swimming can also help deal with lymphedema, and pool temperature is important as the warmer the water the more potential for triggering swelling of the affected limb(s) and surrounding area.
Lymphedema is a life long chronic condition. My lymphedema therapist suggested the compression garments be put on as soon as you get out of bed and well before you start moving around / exercising. I'd suggest you find a therapist, then a fitter for the right sized garments. If you are in Ontario the The Assistive Devices Program pays for upwards of 75% of the cost of garments, and the balance I claim as a medical expense.
Hope this helps with some pointers.
Just like ACH20 I have chronic lymphedema from removal of lymph nodes from my groin, upper thigh. His information and advice are definitely accurate and I hope this is helpful. I have experienced the condition since surgery and radiation in 2016. I noticed the areas affected have changed over the years with the swelling initially in my upper leg and now more so in my ankle, foot. The treatments are essential, including compression stocking, massage and exercise. Where are you located as I can recommend a clinic in Toronto for assessment and followup.
@ACH2015 Thank you for the very detailed and helpful reply. There is a lot to unpack there. Yes, I am in Ontario about a crow's fly hour (not 401 hour) west of Toronto.
Your procedure is the same as the one I had only mine was on the right side. My Oncology Surgeon did tell me it could happen and, if it did, it wasn't something that could be cured but rather a lifetime situation to deal with. That was about the extent of the dialogue at the time, perhaps because it hadn't happened yet.
In fairness to my medical team, the first time it occurred I was seeing the local nursing clinic for surgrery after-care and it was them who recommended I go to emerg. I had a good-sized seroma at the time and perhaps it was thought the swelling was due to that? We needed to bring down the size of the seroma so that I could start radiation and I wore a compression bandage around my thigh every day and it worked to reduce the size of the seroma and radiation proceeded. It also helped reduce the pain when walking. The second time just this past Xmas Eve, it was the Oncologist on-call who responded.
I've had my eyes opened with your information. Did your Oncology medical team refer you for a lymphedema assessment or did you have to do that through your family doctor? Thankfully, my family doctor is awesome and I credit his due diligence for catching my cancer early.
I've noted your valuable suggestions. I'll talk to my team about a lymphodema assessment next time I see them and will take note of the rest. Exercise has taken a hit because I have pain in my leg in activities where it didn't exist before but I will just have to get more creative.
I can't thank you enough for your response. I'll get myself in gear and tackle this the best I can.
Hi @sgt. pepper thanks so much for adding your own experience. I'm close enough to Toronto so that if there isn't a clinic closer to me, Toronto will do. I'm being treated out of Juravinski in Hamilton so perhaps they might have something there but I'll see how that shakes out. I'd appreciate any info you can provide. From your experience and the info from @ACH2015, it's clear that the sooner I pay attention to this the better to do the things I can to manage it. Much obliged.
Yes you should look after this issue asap to get in under control. When it first started for me there were few assessment and treatment options as most clinics here in Toronto focussed on breast/arm related lymphedema, not the lower limbs. Fortunately there are more resources now available for lower limb lymphedema. There is a helpful association in Ontario (google Ontario lymphedema association). I am in active treatment with the Survivorship clinic at Princess Margaret Hospital which has an excellent program and very knowledgable and helpful staff. Just some options for you to consider.
Take care, Sgt. Pepper
I too had seroma's after surgeries, and that is part of the normal healing process. That is why its so important to get a green light from your surgeon before getting a lymphedema assessment and complete healing has taken place.
When I was told I had cancer and my main surgeon (I've had several and 4 surgeries) told me about the lymphedema - my wife and I signed up for as many info sessions we could find. One focused on lymphedema and was at one of the hospitals I received treatment at.
One good place to start would be the hospital you had your surgery at - or received treatment at. Are you still seeing the oncologist, surgeon or radiation specialist at any hospitals for follow up? If you are still attached to a hospital, you may get an assessment for free and then take the assessment to the compression garment fitter.
Go online and go to the Ministry of Health (Ont) site and type in ADP or assistive devices program. Once your form is filled out by you and your surgeon, the lymphedema therapist and the fitter - you get 75% of the garment cost covered by the ADP program. The stockings and shorts I use cost hundreds of dollars every year, so 75% coverage + personal insurance make a big difference. Here is a link from the MOH re ADP program. http://www.health.gov.on.ca/en/pro/programs/adp/
Whom ever you use, make sure they are a licenced Lymphedema Specialist.
Glad the information helped and all the best in moving forward. It is unfortunate that there are not systems in place for patients to get timely “next step” process's lined up. We have lots on our minds in the beginning of the process - and I was fortunate to fall into this lecture and set up with a lymphedema specialist before the surgery even happened. She did some pre measurements and knew what I was like before lymphedema became an issue.
Keep well and reach out anytime!
Hi @ACH2015 - yes, I'm still actively under the care of a Medical Oncologist. Unfortunately, it's just been continuous since the initial lump was assessed in January/February. I've had two surgeries, two rounds of radiation and I've just started Immunotherapy immediately after radiation, as the cancer has spread yet again to two new areas. I see the MO next on Jan 5th for the check-in and next immunotherapy treatment. This Merkel Cell Carcinoma is aggressive. Again, in fairness to my treatment team, we've hardly been able to take a breath between each new recurrence and adjusting to respond to it. I don't think we've had opportunity to discuss lympedema as other things have been in the forefront. This is the second incident now however so it's time to chat with my MO about this.
I'll do my reading before then at the sites you've provided and will bring this up when I see him.
Thanks very much. Take good care yourself and all the best.