Leaking lymphorrhea

[littlejel]

My MLD practitioner says that the leaking patch in breast which is engorged with lymph is lymphorrhea. I am having to change dressings on the area several times a day. 7 months after mastectomy and reconstruction, surgeons and doctors seem to have no cures or even ideas. Does anyone share this problem?

[Lynora]

Have you been assessed by the BC surgeon or nurses? Did you have a seroma post op, which required aspirating? How often are you having MLD? Are you wearing a compression bra? What sort of reconstruction?

[littlejel in reply to Lynora]

I have been back to the BC surgeon twice now and had two ultrasounds. I didn't have any seroma. I had a nipple sparing mastectomy with silicon implant 500ml. I wear a post operative bra but it's not a compression bra. I saw the private MLD practitioner yesterday and she is convinced I need to have the implant removed and is worried about infection and cellulitis. I am having a second opinion from another BC surgeon tomorrow. I too now think the implant needs to be removed so that the lymphoedema can be tackled more effectively but will wait and see what happens tomorrow. Thank you for your post.

[Lynora in reply to littlejel]

Let us know the outcome to the consult.

Is the lymphorrhea seeping from the wound?

[ssc123]

Hi Littlejel,

Sorry you are going through this. My daughter also struggles with lymphorrhea but hers is through the wall of her uterus.

She manages her lymphorrhea through a MCT diet which works really well but I'm not sure that this would benefit you as I'm not familiar with your situation (my daughters is primary lymphoedema) but it may be worth mentioning to your consultant. Additionally, I understand that they can seal the skin using laser therapy to prevent the lymph leaking. This was not available for my daughter due to the location of her leakage. I feel the best way to help with lymphorrhea is different for everyone but hopefully the two suggestions I have made may be worth exploring for you.

Please let me know if you want to know anymore about the MCT diet.

Best Wishes

[littlejel in reply to ssc123]

Thank you so much for your advice. Really interesting and useful information. I am exploring the MCT diet.

[ssc123 in reply to littlejel]

Hi Littlejel. The MCT diet has been nothing short of amazing for my daughter. Her lymphorrhea has almost completely stopped, her lymphoedema has reduced but she also feels energised. It is a very challenging diet and very difficult to find the right information online. I would definitely speak to a consultant and dietitian before trying it (Dr Gordon at St George's recommended it for my daughter). Especially as the MCT oil on prescription is more purified than any commercially available and you will also need supplements for essential fatty acids. The changes for my daughter happened within 3 days of starting the diet so if you did try it you would know very quickly if it was going to have any effect.

I really hope you find something that eases your symptoms.

[lovesradio]

Hi Littlejel

I am so vexed for you after coming through diagnosis and treatment for breast cancer that you have been left with this mess to deal with. I have arm lymphoedema which pales into insignificance compared to your situation. Good luck with the second BC surgeon.

[littlejel]

Having had a second opinion with another BC surgeon she has recommended a second operation to remove my implant. I can choose to have full mastectomy with the nipple removed or try a gradually inflated saline implant to try to keep the lymphoedema in check. Haven't made my mind up yet.

[Lynora in reply to littlejel]

Thanks for letting us know. Do you know of any support groups local to you, where you might be able to ask questions of patients who may have had similar situations?