lymphedema after 30 yrs

[jshowling]

I have a question.. I had cervical cancer at 30 yrs old .. Radical hysterectomy. 49 lymph nodes removed . 6 months chemo and 30 radiation treatments. Then 5 yrs ago i was diagnosed with breast cancer . But anyway a year ago at the age of 59 i was having severe thigh cramping one night .. the next morning i had swelling in my foot and ankle .. the next morning the swelling was up to my knee then up to my groin. My doctor thought blood clot but could not find one . then thought a tumor from breast cancer causing the severe lymphoma. but could not find anything. So they are saying it probably came from when i was 30 and had cervical cancer? I’m questioning the fact that it was almost 30 years ago ? what do you guys think? Thanks Shawn

[Lynora]

Sadly Shawn, this can and does happen. The lymph system suddenly becomes overwhelmed and cannot drain, and as you found, the effects can be dramatic and quick. If possible, get referred to a lymphoedema clinic to get advice about management of the condition.

[jshowling in reply to Lynora]

Thank you

[Lymphet]

I too had a radical hysterectomy at 40, pregnant at the time, and baby survived! Born at 28 weeks. I had ten pelvic lymph nodes removed and 20 years later developed right leg lymphoedema. Triggered I believe by increased weight, over the years! Dramatic and quick. I too was checked for a blood clot. It is more under control than when it first arrived nearly five years ago, but is managed by compression, exercise and cleanliness routine. Slight deterioration of the foot/ankle skin also means wearing a night bandaging. Helped by the Uk lymphoedema clinics. Fast action for flat knit compression garment is essential. Good luck. And KBO.

[jshowling in reply to Lymphet]

Thank you

[AnneBury]

I have primary lymphoedema in both legs/below knee. In one leg the swelling came on overnight and I described it as feeling I had been shot in my calf. The immediate medical view was a possible blood clot. I can't remember when that initial pain went but the swelling remained. A few years later when I saw a leading UK lymphoedema specialist (early days of his career & back in the 1980s) he said it may well have been a lymph clot. He said the lymphatics in that leg were probably always struggling (my lymph vessels are more or less non existent) but eventually gave up. Whether the likely clot caused the "giving up" or was part of it, I dont know.

[jshowling in reply to AnneBury]

thank you

[Mushy1]

Unfortunately, it can happen after that period of time and it could be as simple as a knock on your leg. I have heard many stories about a minor trauma that has caused secondary Lymphoedema and there are others who have lived unknowingly with primary Lymphoedema only for it to show itself after an injury. The key thing now is to get treatment and to adopt a meticulous skincare regime. Wishing you all the best

[jshowling]

Thank you so much ..

[kHP22]

I think a lot of people who’ve had radical cancer treatment don’t actually realise that they are still at risk of developing lymphoedema for the rest of their lives even if they didn’t get anything immediately . It might just be something that has happened to push our immune system under extra strain that triggers it . I had one lady In my support group who twelve years after breast surgery pricked a finger with a rose thorn and it triggered lymphoedema in her arm . Everyone has to be careful but sometimes it’s just something that we sadly can’t control that triggers it . The thing is that although it’s not curable once it happens it’s manageable .

[AR02]

This recently happened to me. Lymphedema in hand and arm 30 years after mastectomy (29 lymph nodes removed) and probably the rest of them removed six years ago. I was shocked. Had always been careful to have blood pressure and any needle sticks on opposite side. Another insult on top of metastatic breast cancer that showed up in 2016, 25 years after original breast cancer.