Lymphedema in seniors (with no insurance)

janveg01

I just wanted to know if there are women out there who have been through surgery, and now are living with lymphedema.  My mum now 70 has had a lumpectomy, mastectomy and lymph nodes removed.  Since last year we noticed we was developing increasing swelling in her left arm.  We have been to our family doctor who gave us the run around and sent us to  physio therapy clinic that doesn't exist, the surgeon who performed all the surgeries said the cancer was back and nothing much she could do and referred her to  a radiologist and oncologist.  My mum refused radiation since she went through this process 10 years ago and was left quite debilitated, the oncologist has put her on some hormone replacement pills that are probably reducing the size of the tumour but not helping with the lymphedema. I have taken her to an RMT for accupuncture Manual Lymph Drainage.  My concern is that surgeons perform these surgeries, the patient is left to deal with all these side effects on their own with no help from the Ministry of Health.  How are they supposed to pay for these costly treatments, each session costs about $100 each.  To be 70 and left with your body badly mangled from surgery and a limb that weighs more than the rest of your body and no one guide you with treatment.  Horrible.

 

Moderators

So sorry for what your mother is going through. You may also find it helpful to read our sections on Lymphedema. 

http://www.breastcancer.org/treatment/lymphedema/r...

Kicks

Doesn't Medicare cover a Certified Lymphedema Therapist?  Not sure as I don't use it - my care is through VA and I definately get my LE care and needed ggarments from them.

hugz4u

Janveg01, Welcome,Please do feel free to post ANY questions. I would be concerned with a RMT giving acupuncture to a LE person. Needles generally are not good if they are inserted into a LE area as they can cause an infection called cellulits which can be serious, even life threatening if not treated asap. Your mother doesn't have cellulitus though otherwise you would have said she has redness in her LE area and flu like symptoms so don't worry. See, stepup-speakout.org for all your LE needs. Some girls her created the website and it is fabulous. You can learn how to help your mom.

I feel for every person with LE but especially seniors as most older ones 70-80's maybe uneducated with LE. The LE field is just opening up bigger as of a few years back.  

Many may not be able to pay out of pocket to learn even the essentials such as wrapping and self MLD so no insurance truly is awful.

It sucks to be a Senior have  and no insurance in parts of Canada where I am. I will never get MLD provided or even garments no matter how low my income is.

My plan will be to have a limited clothing fund, I can envision, probably two new jeans and two good footwear with 5 tee shirts for 5 years if I am fortunate enough. The rest will come from thrift stores.  All coloured coordinated to make it look like I have more cloths than I do. Limited travel for sure and perhaps sell my house so I can still have LE garments and LE care paid by me. Of course by then LE will probably spread to other parts of my body requiring more care, and more money. Oh just throw me at the bus!!!  

Oh and if my income is low, low, low enough then my limited medicare plan will probably supply diuretics for my swollen limb which is the wrong treatment because docs here don't know enough about LE! and have no clue what to do. A good knowledge base is powerful here when it comes to LE

Circassian

Janveg01. Having lymphedema and cancer at the same time self challenging and yes same arm as your mum. Lymphedema care is more advanced seriously considered few places U.S.A (California, Texas & New York) Then Europe it is (Sweden, Switzerland & Germany). My treatment combo is chemo, lymph massage & compression wrap. The first statement a run-a-round means find a better doctor for your mum it will make for better treatment.

hugz4u correct needles, surgery & cutting wounds on lymphedemic avoided unless absolutely necessary (issue is wound healing more prone for infection), unless seeing a wound care specialist too as lymphedema skin is prone towards breaking down.

Lymph drainage massage & compression therapy is the way alleviate swelling (the way around funding is using another medical term for compression wrapping) "Soft Arm Casting" or "Wound Care Bandaging" a really smart Doctor that cared would use this to push care especially if issues skin breakdown (blistering, sores & skin tags) under wound care management to necessitates wrapping her arm tended weekly per wound care nurse. 

The basic compression wrap uses "cotton cast padding" & "foam padding" are often listed by manufacturer under category as limb casting supplies. The compression "Comprile Bandages" & "flex tube gauze bandages" are often listed under the category wound care & limb casting. Just hope not aggravating a real wound (surgery) it necessitates wrapping the arm with long-term healing issues.  

Seen doctors beat rejection funding pure chance finding hairline fractures bone density test/x-ray at her age would inquire as a sure way to push a compression sleeve. Yes, osteoperosis common in breast cancer patients side effects treatment (x-rays, radiation & chemo). This validates a durable compression garment used as soft cast worn and removable allow washing as well as check higher maintenance skin care with lymphedema. 

I'm really sorry for your Mum wish my suggestions truly help but would seek charities that offer at least care/supply assistance or the advantage offering a network member program availing reduced cost supplies and services. I'm fortunate many non-profit member based groups my area engage low fee membership/fundraising activities provides access hire quality service care weekly & direct bulk cost via manufacturer supplies.  

kareenie

janveg it is not clear where you are located. can you tell us please? you mentioned ministry of health that does not sound like usa?

Marple

Jan, if you are checking back in let us know.  Ministry of Health is what we Canadians call it.

Kicks

The Canadian health system is touted here (USA) by many in our government and not, is the 'greatest health system' so we should adopt it here.  Doesn't sound like that at all.