MLD with a non specific lesion in axilla

Sig

Hi all, I need your help and what you think I should do. It first started 2 months ago I start a feeling of tighness  and tingling in my forearm then my hand and fingers started swelling. Within three days my hand had 1 1/2 cm bigger than my other hand and my fingers have 1 1/2 cm bigger. I went to walk in clinic and order an ultrasound, the result came back with a "tiny non-specific hypoechoic lesion which may have an eccentric fatty hilum. Follow up ultrasound in 3-6 months should be considered to confirm stability" BIRADS 3".  So I spoke to my oncologist and he will book me on another ultrasound in about four months. In the meantime I was referred to an MLD therapist and started doing some MLD treatment for lymphedema and was given some home exercise to do for Manual Lymphatic Drainage. So my oncologist told me that I can continue doing the gentle home MLD exercises if I feel ok with this but to wait for the deeper treatment done by the therapist. So my question is should I continue doing my gentle home manual lymphatic drainage to prevent my swelling to get worse or wait until I get the result of my follow up ultrasound, because I am worry if this is cancer cells in my lymp node that it will spread, but on the otherhand I dont want the lymphedema to get worse either. Onc and MLD are not sure if it is lymphedema because it is only in my hand and fingers and the swelling has diminished in my hand but still remain in three fingers. 

Sig

Binney4

Sig, hello,

I'm so sorry! I wish there were definitive answers for you, but there aren't. At least I can suggest some things for you to consider.

First of all, it's not at all uncommon for lymphedema to be limited to the hand or just to one or more fingers. There are many women here with that situation. Maybe you'd want to get a second opinion from another lymphedema therapist with more experience?

The MLD, whether it's done by you or the therapist, is not deep massage. It should be kitten-petting gentle, barely moving the skin with the fingertips or side of the palm. If your therapist was massaging deeply perhaps she was trying to break up fibrosis? Again, this is a question you'll want to get answered, because a well-trained lymphedema therapist should be your best bet with knowing how to deal with your situation because, sadly enough, it's not all that rare.

The protocol for doing MLD in the presence of a tumor is to avoid the area directly above the tumor and, if it is malignant, to be in treatment for the cancer. Since you're still in the waiting stage on this one, it would be your doctor's call to decide whether MLD should be done at this time or not. If he agrees to it, then just avoid the area directly over the lesion.

Has your therapist been wrapping your arm with layered bandages? That too is part of the standard treatment for lymphedema, and wrapping just the hand might be enough to bring down the swelling. That's a very individual thing, though, that only a well-qualified lymphedema therapist would be able to assess. Another possibility while you're waiting would be a night hand garment from a company like Solaris-Tribute. It's bulky but gentle and could help reduce swelling.

Here are a couple of Canadian groups that might be able to help you find another source for a second opinion, if that's what you choose to do:

Lymphovenous Canada
http://www.lymphovenous-canada.ca

Canadian Partners in Lymphedema
http://lymphontario.org

Please keep us posted and let us know what you discover. I hope others will be along with their thoughts and ideas.

Gentle hugs,
Binney

Sig

Hi Binney, thank you so much for answering me. I actually went to two different clinics for a consultation and both therapists were not quite sure of my diagnostic. One of them told me that lymphedema normally does not cause pain. I even saw 4 different doctors and none of them could tell me for sure what I have. One of them was a rheumatologist and told me it could be a beginning of arthritis but he just quickly checked my hand. I did not get a chance to receive MLD done by the therapist yet as I went to consultation appts only but was given some home MLD exercises to do which are type gentle massage, my impression was that the therapist was doing a deeper massage. Is she going to do something different than I am actually doing?   My next appt with her is next week but not sure if it worth paying for another visit or wait till I get result of my  follow up ultrasound which will only be sometime in July. I am actually wearing a compression glove for about one week now (the therapist told me to wear this during the day) and it does bring the swelling down but the swelling returns shortly after I remove the glove. My fingers are painfull and stiff. Do you think wearing the glove would hurt if I have cancer cell in my axilla?. I think my oncologist is not quite familiar with MLD because he told me ok for home gentle treatment but not for deeper treatment done by therapist, so I am quite confused now because I dont know either the difference because I had only consultation appt so far.

Sig

Binney4

Sig, it's true that lymphedema in the arm or hand is often not painful, but sometimes it is. There are several women here who have pain with it. Here's a statement from the National Lymphedema Network's Medical Advisory Committee about pain with lymphedema:

http://www.lymphnet.org/pdfDocs/NLN_Washington_Post_Reply.pdf 

The therapist's massage is just as gentle as the massage you're doing at home, but it's more thorough because she can reach areas you can't, and because she uses a combination of gentle strokes.

Our doctors generally know very little about lymphedema treatment because they do not do it, and it is only rarely part of their training. You're sure not alone in dealing with that! Can you encourage your doctor to consult with your therapist about this? It might be helpful for both of them.

As long as your compression glove fits you well I think you could feel comfortable following your therapists suggestion on wearing it during the day. At night you can elevate your arm and hand on pillows and see if that helps. Stay very well hydrated, and do some deep abdominal breathing several times throughout the day. An isotoner therapeutic glove might also give you some gentle support at night.
http://www.amazon.com/Isotoner-Open-Finger-Therapeutic-Gloves-Large/dp/B000JUFG5K

Do let us know how you're doing!
Hugs, prayers,
Binney

algreach

Sig - I live in Ottawa. Is your physio therapist from a clinic that has lymphedema specialists? The first clinic I contacted did not, and they referred me to Haley Rehab. Haley has PTs that are trained in MLD. Make sure your therapist has the proper training. 

I have lymphedema primarily in my hand and forearm. It DOES hurt. In fact, I was convinced I had bruises in my arm, but my PT told me it was likely the lymphedema causing the pain--and when the swelling went down, the pain went away (mostly). Swelling in the hand can be challenging to control. I have to wear my glove and sleeve all day every day, and I'm getting a glove for the night as well.

Hugs to you as deal with this.

Sig

Hi Binney, now I understand better the difference between the therapist treatment and home treatment, it does make sense what you are saying, I was so confuse with this. You are giving me very informative information, you helped me with my decision, so I think until I get my follow up ultrasound result of my axilla I will just wear my compression glove and keep an eyes on the swelling and if it gets worse I will go back see the therapist. Once I get the confirmation of what is going on in my axilla I will go see the therapist.for MLD treatment but now I am worry to make more harm than good .  I had my compression glove custom made so it does fit well. Thank a lot.

algreach, I am actually going  to haley rehab, this is the place that my oncologist recommended to me. (I am treated/followed a the Ottawa Cancer Clinic). I also went to a place in Gatineau for consultation as it is closer to my home and I want to get as much info as I could but I received a lot more informations at the Haley Rehab and she showed me how to do home MLD treatment, so I will stick with Haley Rehab for further treatment. Haley rehab also told me that it can be painfull and the other in Gatineau told me it usually not painfull. So I guess it does hurt, you are the prove.

What is the difference between a night and day glove?  because you are saying that you are getting a glove for the night?

thank you, I am gathering as much info as I can.

Sig 

algreach

I don't know all the technical stuff--I'm new to this as well--but the night glove I'm getting is filled with foam chips. It's more restrictive than a daytime compression garment, but in my case at least, it helps with swelling I get at the base of my thumb and in my fingers. 

Wishing you the best. 

Binney4

Sig, here's an example of a night glove (click on "Caresia" and scroll down):
http://solarismed.com/store/cart.php?m=product_detail&p=6

Your plan sounds like a good one. Do keep us posted, though. We're looking forward with you to a quick and simple resolution.

Be well!
Binney

Sig

Thank you so much girls for your informative comments/links. My next follow up ultrasound is booked on Aug 8th,(4 months f/u), I find this quite far but my oncologist said that he cannot physically feel any lump so he is going with what the radiologist wrote on the report.. As my ultrasound appt is quite far I have decided to keep my next appt with my MLD therapist to confirm that I am doing  my home MLD treatment correctly because if my hand/fingers get worse then I will resume my home MLD treatment and I also have several questions for her to help ease my mind.

Sig

Binney4

Sig, good idea. Please let us know how you're doing and what you discover when you see her.
Hugs,
Binney