Has anyone had breast lymphedema which then spread to the arm?

Posted by timely @timely, Dec 8, 2023

This is a stress situation.
I am in the process of learning breast self massage as I am dealing with breast lymphedema. Discovered with mammogram and ultrasound in August 2023.

I have arm measurements from Jan 2023 and September 2023.

Now, in Nov. 2023, both arm measurements have gone up slightly.
Lymphedema PT suggested even the week before I asked her to remeasure
arms that became I had muscle pain in one spot of arm of breast lymphedema that I should get a sleeve and hand glove. But she said that I did not have lymphedema in arm. This upset me as why if I don’t have lymphedema there would I want to do this….Feel like it is a crazy situation. Is this a prefigure of arm lymphedema? There was a post on Pub Med. mentioning this idea..of prefigurement. She claimed I did not have arm lymphedema. After measurements, she thinks that the slight increase is muscle build up.

Add to the mix, Pub Med says that if you take calcium channel blockers that you can get lymphedema and lymph problems (Pub Med. Stolitz 2019)
I am taking calcium channel blocker.

Please reply with feedback and ideas to make sense of all this.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Dec 12, 2023

Hi @timely, I'm tagging fellow members like @katrina123 @leolion811 @sarahmh @trixie1313 @cindylb and @flowerfarmerforever who have experience with breast lymphedema and who may have experience to add.

Timely, do you take calcium channel blockers for blood pressure issues? Did the therapist explain the criteria she used to determine that you don't have lymphedema in your arm? Is there anything you've been doing physically that would lead to muscle increase?

leolion811 | @leolion811 | Dec 12, 2023

I don’t know what calcium channel blockers are? I just found out that my TNBC is back… I am in shock 😮

Colleen Young, Connect Director | @colleenyoung | Dec 12, 2023

In reply to @leolion811 "I don’t know what calcium channel blockers are? I just found out that my TNBC is..." + (show)

Oh @leolion811. I'm so sorry to hear that triple negative breast cancer has returned. This is such a gut punch! No wonder you're in shock. Do you know what the next steps are yet?

sarahmh | @sarahmh | Dec 12, 2023

I assume you had lymph nodes removed; may I ask how many? I had four removed and developed breast lymphedema shortly after. I keep it under control with a Swell Spot and a weekly lymphedema-focused exercise class (it helps your entire lymphatic system). I do worry about developing lymphedema in my arm, since my doc told me it can appear even years after surgery. I make sure to get all blood draws and pressures taken on the “good” side so as not to invite lymphedema in the arm. I also wear a compression sleeve if flying.

leolion811 | @leolion811 | Dec 13, 2023

In reply to @colleenyoung "Oh @leolion811. I'm so sorry to hear that triple negative breast cancer has returned. This is..." + (show)

Tomorrow is my diagnostic mammogram/ultrasound and waiting to find out when my Petscan will be scheduled- then surgery. I am in shock- it is only been 1 year since I completed everything for my reoccurrence.

leolion811 | @leolion811 | Dec 13, 2023

In reply to @sarahmh "I assume you had lymph nodes removed; may I ask how many? I had four removed..." + (show)

5 lymph nodes removed for my reoccurrence but my breast lymphedema started with my original breast cancer ( only 3 removed then) is your lymphedema class online? I wear a swell spot too. No problems with my arm.

sarahmh | @sarahmh | Dec 13, 2023

In reply to @leolion811 "5 lymph nodes removed for my reoccurrence but my breast lymphedema started with my original breast..." + (show)

I see. I’m very sorry about your recurrence. Are you a candidate for Verzenio? From their website: “Verzenio is approved for women with HR+, HER2–, node-positive early breast cancer with a high risk of returning, as determined by a doctor, or certain types of HR+, HER2– metastatic breast cancer.” I take it in addition to an AI; my oncologist is a big fan.
The lymphedema exercise class I do is in-person at a cancer resource center in my city. The class is called Healthy Steps and is based on the Lebed method; if you don’t have an in-person class available to you, check out this link: https://www.gohealthysteps.com/find-a-class.html
It looks like there are YouTube videos and maybe live classes online. I find Healthy Steps extremely helpful, and can tell a difference when I miss more than a week.

timely | @timely | Dec 13, 2023

In reply to @colleenyoung "Hi @timely, I'm tagging fellow members like @katrina123 @leolion811 @sarahmh @trixie1313 @cindylb and @flowerfarmerforever who have..." + (show)

@colleenyoung

Hi Colleen:

Thank you so much for reply and adding in others who have dealt with this.

1) I am taking calcium channel blockers for blood pressure.
I also take Eliquis for arrhythmias.
2) Asked cardiologist to give me another blood pressure med, He wanted to give me Digoxin.
I read the side effects and that it is dangerous to take with arrhythmias and declined. At least he believed the Pub Med study on calcium channel blockers and lymphedema.
Told him that I would get back to him after the holidays.
2) Re: PT therapist
She measured both arms and said a slight increase in both. She just said that she did not think it was lymphedema and did not state her criteria.
I really do not see anything that might have caused a slight muscle increase.
3) My Internist discounted the study and said that I had nothing to worry about taking the calcium channel blockers and effecting lymphedema.
4) The Canadian Lymphedema Association stated that the calcium channel blockers should not be taken with lymphedema. Saw this post after I saw Internist.

timely | @timely | Dec 13, 2023

In reply to @sarahmh "I assume you had lymph nodes removed; may I ask how many? I had four removed..." + (show)

Hi @sarahmh

I had two sentinel nodes removed. The breast surgeon said that he had to “dig” out the smaller sentinel node under the bigger one.
Since the 11/21/22 surgery, I had pain at sentinel node site, middle of armpit and top of armpit. That lasted until lumpectomy PT massaged that in November 2023. Also, had an
allergic reaction to the dissolving stitches all along bat wing stitch area and at sentinel node. My body encased each stitch in small bumps instead of dissolving them so I had perhaps 40 bumps which took at least 6 months to finally dissolve. One bump
lasted 9 months.
Plus, radiation therapy gave me fibrosis and scar tissue.
Only 1% of those with only sentinel node removal get lymphedema.

The lymphedema PT had me get this product that fitted into the bra area all the way to the bra hooks in the back. It was hug and unwieldy and difficult to get in the bra. (It was like a gigantic swell spot. Lol.)

Could not use.She made me a bag to fit in the bra with different size sponges which fits.