Lymphedema

Naady

My hand is swollen for past 2years. Tried all I can

Moderators

Hi Naady, welcome to Breastcancer.org!

Sorry you're suffering this side effect, but glad that you reached out! Have you tried also with an experienced lymphedema therapist? We're sure that our experienced members here will give you more tips and advice but, in the meantime, you may want to take a look at the following articles from our main site. Hope this helps!

• Finding a Lymphedema Therapist
• Lymphedema Treatments

Let us know how you're doing!

The mods

tsoebbin

naady, what have you tried?

Kicks

What have you tried? Do you have a DX of LE?

joannnc

Lymphedema is difficult to deal with.  I have had it since 2004 and I have learnt to accept and deal with it.

I only wore a sleeve for several years then in May of 2014 - three years ago - my hand swelled up terribly.  I found a good therapist who wrapped me for several weeks.  I do self-massage several times a week and at least 1/2 of the day I wear a sleeve AND glove.   I see my therapist twice a year for maintenance. 

Good luck to you.  LE won't go away but it can be controlled. 

Kicks

The OP has still never said anything except "Tried all I can". But has not said anything that has actually been done.

I've dealt with LE for 7 yrs. The only time I had issues with my hand swelling at all is when my garments (especially glove) was too high level compression. For others, they need higher level compression but not all - we are each so unique!

Until the OP ever says what has been " tried" - no one can possibly offer info based on their experience as it very well not be aplropropriate.

(I wear my day garments, night garment and use my Flexi-Touch MLD daily. The OP never mentioned what has done.)

ksusan

"Still," "ever," "never"? The OP was only 16 hours before your post, and it's her first post.

Matryoshka

Hi ladies,

I recently went for lumpectomy and sentinel node removal on the left side, recovering quite nicely. But now my Oncologist wants me to go in for a second surgery, an axillary lymph nodes clearance, as one of the two sentinel nodes removed had "nodal expansion". I was really hoping to avoid removal of all my lymph nodes, as I am a left-hander and really worried about the potential side effects of removing all the axillary lymph nodes

Can I ask if anyone who has gone through an axillary clearance on their dominant arm encounter any serious debilitating symptoms to the extent of not being to write or type on a keyboard? I am really worried about my ability to work after the procedure, but my Oncologist feels that it's better to remove all than just go through radiation therapy, to make sure that all the cancer cells are "caught and removed". Any advise or tips that Doctors or nurses may not tell us?

In other good news (given to me at the same time I was told I needed an axillary clearance), the lump removed had clear margins and tested to be grade 1, which is a big relief. I will still need to go through chemo and radiation therapy, it seems, but I kept reminding myself all these are but just another step closer to recovery.

I have read that some people go through Oncotype Dx testing to determine if chemo will be beneficial. Any advise on whether this test is still necessary for me now, since one of my nodes has cancer and I will be going through the clearance? My Oncologist seems to feel that since I am young (34 years old), it is still good to go through chemo especially in view of the cancer in the node.

On a side note, it's been almost two months since I was diagnosed, the amount of options and knowledge to learn is so still massive and overwhelming. I feel like I am back in school. The Doctors and Breast Care Nurses also don't seemed to volunteer extra information other than the fundamentals until I ask. I am quite worried there may be options I may have that is less drastic and less invasive, but no one is telling me.

stephilosphy00

Hi Matryoshka,

I am going through something similar! I had a mastectomy and SNB last Wednesday. I did chemo first, I had one node confirmed positive by biopsy pre chemo and I am pretty sure it is still positive post chemo. They ended up only removing two sentinel nodes which include the one very likely is still positive. I told the surgeon from day one I don't want ALND even she found positive sentinel nodes based on a lot of studies prove that radiation is just as effective as ALND! She agrees about that and only removed two nodes in the surgery. As far as I now, ALND cannot increase survival rate and I don't understand why many surgeons still insist on doing it. Am I actually missing anything?

Matryoshka

Hi Stephilosophy00, good that your doctor is willing to let you avoid ALND. I am struggling with it even though my surgery is tomorrow, but I know that my Oncologist really feels it's best for me, so I am going to trust her. She is a sought after Oncologist here, and her willingness to fit me in for the procedure at such short notice, makes me want to have more faith and hope for the best.

How are you now, after your surgery?

Jennie93

Matryoshka, I was scheduled for SNB and the surgeon ended up removing 6 nodes. I don't know if they were all stuck together, or if he just took twice as many as had cancer in them. I was told right afterward that 3 nodes were positive. Several days later the path report came back and found some microscopic cancer in the 4th node. Even with all that, both surgeon and RO agreed that in the past, they might have gone back in and done a full ALND but nowadays they feel that radiating the heck out of it is more effective. I had to have chemo and rads anyway because of the positive nodes. None of the drs on their cancer board suggested removing any more nodes.

I would get a second opinion, personally. I've had many issues and limitations in my surgery side arm. I'm very thankful it was my non-dominant side.

hugz4u

Naddy. I'm not sure if your able to type as maybe your hands are too swollen or your just too exhausted physically or mentally to give us more infomation. I'm really glad you posted though.

We need to know what kinds of things you have done to help yourself. Would you be able to tell us or have someone type for you if that is so. We would love to help you. Are you wearing a glove and sleeve? Have you seen a special lymphedema specialist yet? Please reach out to us for more help by telling us your story

joannnc

Not everyone develops lymphedema but you are right, with a full node dissection, you are at risk.  I have lymphedema in my dominant right arm.  I worked for 8 years after my diagnosis.  I had no trouble typing as my hand was not swollen and I did not wear a glove.  I have needed a glove since 2014 and if I am going to a great deal of fast typing I do remove my glove and I have not lost any mobility in my right fingers.  I had 22 lymph nodes removed and 5 weeks of radiation.  I had chemo before surgery and that is why I had all the nodes removed.  This was back in 2003.  My tumor was grade 3.   Some ladies get just a few nodes removed and develop LE and others have 30 removed and do not.  It is just one of those things.