Lymphodoema in torso

[Savagebread]

Appear to have lymphodoema in my torso following diep flap & mastectomy surgery three years ago (as well as mildly in my arm). To have it in your torso (above bikini line) seems very unusual, does anyone else have this?

[HazieC]

Hi I do as well as it being in both my legs. For a long time I could not understand why I kept looking like I had a pregnant belly until I was diagnosed with secondary lymphodaema and was told my lymph nodes in my groin area were the problematic ones which would cause this problem. What advise have you been given to manage it?

[Savagebread in reply to HazieC]

HiI can’t thank you enough for your reply. I empty my lymph nodes at the top of my legs, wear lashings of tape and stroke the lymph away across by stomach. My waist varies by up to 10cm over the day (it mostly goes down overnight). Mine was caused by stomach surgery to rebuild a mastectomy. Its also mildly in my arm. What have you been advised to do and does it help?

[CCT67 in reply to Savagebread]

See my comment below re what to do to help lower torso swelling

[CCT67]

Hi, it’s not unusual to have Lymphoedema in the lower, upper or full torso (Primary and Secondary LE). However it’s not as common as having it only in the limbs. Doing specific lymphatic breathing exercise is extremely helpful to promote lymph drainage from the lower torso/abdomen. We have a large cluster of lymph nodes in the abdomen so if they are not draining on their own swelling occurs. Having a ‘lymph bump’ tummy isn’t pleasant! Are you under a Lymphie clinic or seeing a private lymphoedema therapist who css as I advise you? There is compression for the torso that you may find helpful

[Savagebread in reply to CCT67]

Thanks. I see a lymphoedema nurse. She doesn’t seem to know any others with torso lymphoedema so I’m strangely reassured to hear from you that it’s not rare. Am not aware of specific breathing exercises. I do wear a compression vest which is usually for stoma patients but it does help. Do you know where I find out about breathing exercises? Many thanks again, help is gratefully received as it’s having a huge impact on my life.

[CCT67 in reply to Savagebread]

Hi there I’m very sorry to hear your lymph nurse is less experienced in supporting Lymphies with torso swelling. It’d sounds like she has limited experience or breadth of experience. It’s good to hear your compression vest helps. Many Lymphies with lower torso swelling wear bicycling shorts which are tight and therefore provide some compression. There is also made to measure compression available on prescription that is like bicycle shorts but proper lymphatic compression. Your lymph nurse would need to measure you if you needed lower torso compression. The top of the compression shorts could come up much high than your natural waist if you wanted them to come all the way up to just under your breasts (that’s how I wear them due to my lymphatic issues).

Below are links to an excellent site hosted by a lymphedema specialist for learning about all aspects of Lymphoedema and treatment. Here are two articles about diaphragmatic/ lymphatic breathing and why it’s so important for us as lymphies. I do at minimum every day 3 sets of lymphatic breathing exercises for 10-20 breaths. I start my day doing the first set before I get out of bed.

lymphedemablog.com/2015/12/...

lymphedemablog.com/2011/01/...

[Savagebread in reply to CCT67]

Brilliant - thank you.😀

[lizamorton]

I too have torso lymphodoema after cancer breast surgery. I also have it in my arm. Although I have lost 2½ stone in weight I still have this large amount of flab round my waist and up to my arm. No one seems to know what to do about it. I have tried massaging the lymph nodes in my groin but does not help. It does not go down at night.

[F18Edge]

Hi, really sorry to hear you have got in your torso. Mine at the moment is mainly hand and arm which is extremely annoying and i am gradually increase what i do to see if it makes any difference or not. Before all my surgery and cancer itself i was racing my catamaran, water skiing and basically an all round active life. Chemo increased my weight by 3 stone so also still working on getting that off.To date my weight coming down, i use a rowing machine and increasing the pace on that, back racing and this last weekend got back on my wakeboard.

I use a pump every day and compression garments to hand and full arm, everything at moment quite stable and continuing on my quest to get my strength back in my arm and wrist. My theory is to loose weight and try to get back to my normal slowly, finished my chemo 14 mths ago and radio 13 mths ago and i think still carrying fare bit of water.

Also the surgery is still healing and im finding its a case of pushing but slowly, the radio also knocked my thyroid out so have medication for this now which is helping.

I'm learning but refuse to give in and that is the only advise i can give to this very frustrating condition. xx

[Savagebread in reply to F18Edge]

Great to hear you got back on your wakeboard. I’m taking your advice as I don’t want to give in. My life was never as sporty as yours but I just want to be able to cycle and walk moderate distances again.

[Angelil]

Hello there

I have it in my lower torso.

I have bilateral leg, groin and pubic lymphoedema as a result of extensive surgery following cancer. The swelling is mild and managed well so the legs are barely an issue now but my groin and pubic area up to the lower abdomen can be quite swollen by the end of the day. I had microsurgery on my legs a few years back and the scan I had prior to surgery showed that the lymph fluid was “overflowing” into the lower abdomen which was being hindered by my previous cesarean section.

Whilst surgery or compression do not really help this situation I find that massage does. I start with some deep breathing or a few yoga exercises. Then I massage from my groin area towards the side of my body to direct it away from my abdomen. Followed with massage up my sides towards the armpit and from my hips up my back (husband helps). Basically I try to redirect the fluid to the side of my body where it drains easily rather than let it go to the stomach where it doesn’t! I don’t do it every day but try to do a good session every couple of days.

I’m not sure if this will help your personal situation but it’s something you could discuss with your lymph nurse to see if they could suggest the best way for you to tailor your massage to the situation. If your lymph nurse doesn’t have experience of swelling in the torso maybe he/ she could seek advise from a colleague who does?

Good luck

😃

[Savagebread in reply to Angelil]

Thank you. I have started doing more deep breathing and exercises focussed on my torso mostly thanks to everyone’s replies. I’m doing it at least twice a day and there is a slow but noticeable improvement. I will try to direct it to side snd back as you suggest where there is no damage (I think). Am about to be scanned so will be interesting to see what it shows. Thanks again.