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.

sarahmh | @sarahmh | Dec 13, 2023

In reply to @timely "Hi @sarahmh I had two sentinel nodes removed. The breast surgeon said that he had to..." + (show)

So we are in the 1%? I sure wish it was the financial 1%; I’d pay everyone’s medical bills! It’s such a slap to not only get cancer but have to pay tens of thousands for the privilege.
Hey, I have “sensitivity” to Vicryl sutures as well! My OB first recognized it, when the 40 stitches I got after delivering my first baby didn’t dissolve, and the tear took 4 months to heal, and hurt and itched and was swollen. I mentioned the suture sensitivity to my breast surgeon and IR doc who inserted/removed my chemo port. They didn’t seem to have heard of this and I don’t think they took it seriously, and I had the same issues (but much less severe) at my armpit and port incisions. My skin would also “spit out” little pieces of suture material for months. The breast incision, which curved right around my areola, was pretty much fine, except for the visible knotted end which took forever to disappear/fall off/dissolve. I had my port removed 1.5 years ago, and I think I currently have one of those bumps encasing a stitch that you’re talking about!

sarahmh | @sarahmh | Dec 13, 2023

In reply to @timely "@sarahmh Is your lymphedema class on line or in person? Are these a group exercise routine?" + (show)

My class is in-person at a cancer resource center in my city. The class is called Healthy Steps; we do it as a group. It’s not strenuous at all, and most moves can be modified if needed. Check out this link; it looks like it has YouTube videos and maybe online classes.
https://www.gohealthysteps.com/find-a-class.html

timely | @timely | Dec 13, 2023

In reply to @sarahmh "So we are in the 1%? I sure wish it was the financial 1%; I’d pay..." + (show)

Hi @sarahmh

Thank you so much for getting back to me.

It is amazing that you had the same experience with an allergic reaction to the self-dissolving stitches.
I even had that tied knot sticking out after 6 months and pulled it out.

I wrote to the company that makes the Vicryl stitches.

There was a post on Pub Med about this very problem with the Vicryl stitches in 2009 that some have had this experience.

I also had an allergic reaction to the chlorihexidine which they used to clean my breast before surgery. Breast got pink and burned and the skin looked like there were small paper cuts.
The nurse washed it off with regular soap.

I read that in some hospitals they use chlorihexidine to sterilize the Vicryl stitch material before use and the stitch material is soaked in it…

I have put on my charts for 2 hospital systems to not use Vicryl or chlorihexidine on me.

Also, my daughter had the same reaction to stitches after her caesarean.
She never told me until after I had my experience.

I have seen a posting on another site of 2 people who had this problem.

Otherwise, we are almost one in a million. ☺️

My theory is that all this did not help the breast and may have inflamed it and caused lymph problems.

myoga | @myoga | Dec 13, 2023

In reply to @leolion811 "Tomorrow is my diagnostic mammogram/ultrasound and waiting to find out when my Petscan will be scheduled-..." + (show)

Sorry to hear that your cancer came back in just a year. Is it the 2nd recurrence? Are you taking AI? I read some where that AI is not effective for recurrence and cancer resistance to AI and Tamoxifen is inevitable. Hang in there. Things will get better. Hugs.

leolion811 | @leolion811 | Dec 14, 2023

In reply to @myoga "Sorry to hear that your cancer came back in just a year. Is it the 2nd..." + (show)

Yes, my 2nd reoccurrence. Had my mammogram/ultrasound today- no cancer but it was positive on Tuesday on my skin. Having a Breast MRI on Tuesday and Petscan on Thursday…

What is AI? Artificial Intelligence?

Not hormonal cancer- TNBC .

Thank you 🙏🏼

myoga | @myoga | Dec 14, 2023

You're funny! AI is short for aromatase inhibitor which suppresses estrogen in hormone positive cancer. Hang in there. Vaccine targeted TNBC is in clinical trial https://abcnews.go.com/GMA/Wellness/breast-cancer-vaccine-now-early-clinical-trials/story?id=105550075 . Will keep you in my prayers tonight. You'll be all right. Hugs.

leolion811 | @leolion811 | Dec 15, 2023

In reply to @myoga "You're funny! AI is short for aromatase inhibitor which suppresses estrogen in hormone positive cancer. Hang..." + (show)

Thanks for clarifying AI 🥰
Have you ever heard that an ultrasound doesn’t pick up anything on “skin” like my is. I found that strange. I hate breast MRIs- very uncomfortable laying on your stomach on the board.

Thanks for the link.
I will check it out…

myoga | @myoga | Dec 15, 2023

In reply to @leolion811 "Thanks for clarifying AI 🥰 Have you ever heard that an ultrasound doesn’t pick up anything..." + (show)

I haven't heard that US picks up cancer on skin. But that just me, I don't know much about US. I always thought US is used to detect tumor and determine if it's a solid mass (hypoechoic) or just a cyst (hyperechoic). That's what I read online. If cancer is detected on your skin, you may want to ask your oncologist about angiosarcoma. It's very rare but could be caused by radiation therapy. Just to be on the safe side. I don't like MRI either but it detects cancer better than mammogram. I'm claustrophobic 🤢 I found the tumor during self breast exam. My Dr ordered mammo and US. Mammo didn't detect anything. US showed a solid mass. Needle Biopsy result was Atypical Ductal hyperplasia. My surgeon decided to do excisional biopsy. It came back as cancer. Lucky me. Sounds like you have a old team. Wish you all the best.

myoga | @myoga | Dec 15, 2023

I mean a good team. So much for auto filler!

leolion811 | @leolion811 | Dec 16, 2023

In reply to @myoga "I haven't heard that US picks up cancer on skin. But that just me, I don't..." + (show)

I wish all the best too. It was explained to me yesterday that US only picks up inside of the skin. Thank God my surgeon did a punch out biopsy since mamma/US wouldn’t have picked it up.
What do you mean by an “old” team?