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

Thank you for your kind words. Sorry you are dealing with all of this. Can you call another member of your team to see if you can get in sooner? I have 5 doctors in my team. Keep calling til one of them can see you before February.🙏🏼🙏🏼

As for me, I felt a tiny little bump on the outside of my skin this summer. Had my bilateral mammogram/ultrasound- they saw something - had biopsy and I told the radiologist who did the biopsy to look at the little bump. She wasn’t concerned- thought it was a pimple ( it was on my dissection scar)My biopsy was negative. )?end of August). If I touched it or if my bra rubbed against it- it hurt. It didn’t go away or get bigger (stayed the same)
Saw my medical oncologist- she wasn’t concerned as well. Then in the middle of November, I saw my radiologist oncologist and PA- they weren’t concerned BUT the next day they called me that they had discussed about the tiny bump and wanted me to see my breast surgeon. Saw her and her PA and at first they weren’t concerned at first but they wanted to do a punch biopsy and they did
(Johns Hopkins) - took 13 days for the results 😡 and it came back positive for cancer 😭 the entire team were shocked including me!!

Sent me for another mammogram/ultrasound last week. They didn’t see anything. The radiologist explained that they don’t pick up anything on the outside of the skin. Recommended the dreaded Breast MRI and Petscan.
Had the MRI on Tuesday and Petscan today. Results are —— that tiny bump is in armpit( they believe it could be a lymph node) but I had all the lymph nodes removed during my right auxiliary dissection. My medical oncologist gave me the news this afternoon ( very impressed the results came back less then 3 hours! Anyway, I have a 4:00 video appointment tomorrow with my breast surgeon. I am very happy that there isn’t anymore cancer in my body ( just the 9mm spot)
Whew 😥 that was a lot to write. I am glad I did for you & for others to read. So if something doesn’t feel right, call your team!!

Best wishes and keep me posted 🙏🏼🙏🏼

@timely
It could be you're having "axial webbing" which is a type of lymphedema which causes pain and limiting motion. I have lymphedema of the breast at times with "cording" or "axial webbing" going up my arm at times all the way to my wrist. The physical therapist started me on a "swell spot" which I wear under my bra for a week or two at a time which helps to resolve this, however, it does re-occur at times - it's just something I'm learning to live with and, now that I know what to do, I'm okay with it. The swell spot also helps soften the radiation fibrosis - yes, isn't that another great side effect, like having a lump of cement riding over your ribs? For the tender areas from surgical scars, I use Calendula cream (Boiron makes a nice cream) and that tends to help calm it down. Hang in there...wishing you the best.

Hi@Trixie1313:

Thank you so much.
The axial webbing sounds
like something that I am working with.

I had a problem with the chip bag that the PT made for me.
If I wore it with any bra, it put pressure on the sentinel node area and caused pain at armpit and some spots on the arm which made little knots.

I do not see my PT again til the 2nd week in January.
I can only wear the mastectomy bra with a silicon liner on the lumpectomy side. This compression bra does not have any seams as such or are minimal and soft.
Are you wearing the swell spots inside the compression bra and where?
Should I be getting swell spots and putting them inside the compression bra with the silicon liner.
The silicon liner was very expensive and I do not want to damage it.

I have not found a regular bra that I can wear with the chip bag. I have stopped using the chip bag. All other bras cause pain at the sentinel node, and armpit.
Where did you buy the swell spots?

@timely
I'm not sure what a "chip bag" is, but maybe it's similar to a "swell spot." I've never had a silicon liner and not sure what that is as well. Following my lumpectomy, I had to go get my breast drained of blood (needle aspiration) about 5 times of honeycombed seromas. Following the lumpectomy a few months later, I had to undergo mastectomy and I chose to have both breasts removed...I decided to go flat....then came the radiation (30 treatments in two areas, front and back). When I had the axial webbing, it was so bad that I couldn't even lift my arm up as the lymphs blocked all the way down to my wrist. My PT started me with a WearEase post-mastectomy bra and a JoviPak serratus anterior pad which I wear under the bra -- it reaches from my breast all the way back toward my rib area. I was advised to wear this throughout the day continually for about 3 weeks. It did help with the aid of the PT working on all the pressure points from my wrist, along my arm, at the armpit, and breast area -- quite painful as she would push on the pressure points and also lift and pinch the lymph veins. I was very fortunate as at my Kaiser PT Dept, there are two PTs who are quite knowledgeable in what to do for these problems. So between that and radiation fibrosis, my breast was even more sensitive. What I have found is that the arm axial webbing, breast lymphedema, and fibrosis can, and have for me, reared their ugly heads up but with the knowledge I have on how to treat the symptoms, I am well armed with my trusty post-surgical bra and swell spot. These problems are definitely not for the faint of heart, but please look forward and not backward as how you feel today is not how you will feel in a year from now.

@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.