Topic: Does Lyphedema spread?

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: May 3, 2022 10:31PM

Posted on: May 3, 2022 10:31PM

amy123 wrote:

Hi ladies,

Do you know if arm lyphedema can spread to the leg? I had a total masectomy last year and had 1 sentinel node removed. I was diagnozed with lyphedema in the right arm 3 months later. Earlier this year, I had DIEP flap reconstruction. Just 1 month after the surgery, my right leg starts to swell. My right toes get swollen after I walk or drive for a few minutes. My right shoe is so much tighter than the left shoe to the point where it hurts. If I sit down for a long time (1hr+), my right thigh becomes very numb. You can tell my right thigh is visibly thicker than the left one. The right thigh also feels more firm than the left. Sometimes, I feel tingling and pain when my right leg swells. If I elevate the right leg, the swellness goes down. It just feels exactly the same when my right arm started to swell. I am worried that I might have lyphedema in the right leg as well.

I went to see a lyphedema therapyist today, she will not treat my leg because I only have a referal for the arm. She ask me to see my surgeon first to make sure it's lyphedema. I mean my surgeron only deals with breast reconstruction, he won't be able to diagnoze lyphedema. She said removing a sentinel node in the arm won't affect other areas of the body like my leg. But I heard from another therapyist that even missing just one lyphm node, it can affect the lymph fluid movement for the whole body.

I'm so worried and scared because I don't know who's telling me the truth. And I can't seem to find anyone to help me with my leg. :(

Surgery 4/20/2021 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/20/2021 Zoladex (goserelin) Chemotherapy 5/27/2021 Surgery Hormonal Therapy
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May 3, 2022 11:46PM trishyla wrote:

I have had the same issue since my DIEP flap surgery. It isn't that the lymphedema is spreading, it's that the lymph channels in your groin area have been interrupted by the DIEP surgery. Most surgeons will deny that that's the case, but my extremely experienced lymphedema massage therapist was the one who told my that the surgery was to blame.

Also, I used to carry much of my weight in my midsection. Since I no longer have those fat cells in my abdomen, the weight has to go somewhere. For me it's in the upper abdomen and in my formerly thin legs. It's very depressing.

Talk to your primary care doctor about getting an evaluation on your leg. In the meantime look up "dry brushing techniques" for lymphedema. It really helps me.


Good luck.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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May 4, 2022 09:31AM specialk wrote:

I too would be suspicious that this is "secondary" lymphedema (lymphedema caused by surgery, not a condition that occurs spontaneously without any surgery, called primary lymphedema) caused by your DIEP surgery, and is not related to the sentinel node biopsy during your breast surgery. Because you developed secondary lymphedema in the arm after just one node removed it might be fair to say that this is something you are prone to. I don't have a large number of nodes, a complete dissection on my cancer side yielded only 12 nodes, including the SNB, and I had one node removed on the prophy side and developed lymphedema on both sides. As trishyla said above you should see if you can get a referral from your primary care, but if your reconstruction doc routinely does DIEP you are likely not the only patient with this issue, so it is possible they could do a referral also. In the interests of being thorough I would also see if you can be evaluated by a vascular surgeon for incompetent veins in your legs. I had some swelling in my left foot and ankle that happened out of the blue - enough that I could not wear the left shoe of most of my pairs of shoes. I don't really know if my upper leg was affected - if so, it was mild. Ultrasound indicated incompetent veins bi-laterally and the blood as it circulated down my legs was pooling because the vascular system was not working properly. This can be caused by, and or complicated by, varicose veins. So, if you already have those, that can be an indicator, but I wonder if the DIEP is also an indicator because of the disruption of the normal vasculature. When you elevate and the swelling goes down makes me wonder if this is what is happening. I had both legs treated and the problem went away, but I suggest it not only to potentially solve the swelling issue, but this problem can also cause a clot to break loose and that can be dangerous.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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May 4, 2022 01:53PM serendipity09 wrote:

Trishyla - how soon after your surgery did you develop LE?

I had my BMX with TE's and then exchanged to implants and do not have L, thank goodness. However, I am scheduled for a DIEP in August and I worry about the risk of developing it.

Funny enough, I just started dry brushing my legs l as it was recommended to help restless leg syndrome, hopefully Im ahead if the game will not develop LE because I am doing this now.

Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/3/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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May 4, 2022 03:22PM ratherbesailing wrote:

I, too, developed lymphedema in my leg, particularly one side. I had a really bad cellulitis infection in my lower abdomen right after DIEP surgery, and the swelling started after second-stage surgery, where I had liposuction on the thighs to harvest fat for augmentation of the DIEP breast. In my case, I suspect the latter two factors were more at play than the DIEP surgery itself, but I am not a physician. Finally, the lymph massage pattern I had been practicing for truncal lymphedema pushed fluid into the groin area, which undoubtedly, in retrospect, didn't help.

It seems to me the fact that the swelling occurred so soon after surgery would point to lymphedema, but we are hardly experts, and specialk brings up a good point about vascular insufficiency. The two are related and you should get checked. If your plastic surgeon won't make a referral (and I'm with trishyla about the denial factor) then ask your primary care.

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May 4, 2022 04:46PM amy123 wrote:

Trishyla - thank you for sharing your experience and your clear explainations! Lyphedema can develop from diep flap surgery! I'm so glad to know that I wasn't paranoid. As my body experiences all the symptoms I knew something was wrong. Wish I had the luck to get an experienced lyphedema therapyist. All the ones over here are not so knowledgable or professional. Some even brush me off by telling me I don't have to worry even though I show so many symptoms. I wish somehow more people are aware of lyphedema, because misdiagnose and neglect can cause so much preventable damage. I will definitely look into dry brushing techniques. Thank you for your kind recommendations! Hope everything goes well for you!

Surgery 4/20/2021 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/20/2021 Zoladex (goserelin) Chemotherapy 5/27/2021 Surgery Hormonal Therapy
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May 4, 2022 05:15PM amy123 wrote:

specialk - thank you for your reply! my surgeon said it could be a blood clot too. he ordered an ultrasound for me. TBH, i wish it's a blood clot because there is a cure for that (lol) Call me crazy but i would rather take medications or have surgery to get rid of a blood clot than being wrapped and putting time away on massage for the rest of my life. i guess it's because living in a constant fear of having elephant leg haunts me all the time. thank you for sharing your experience with vascular issues, it does remind me of my swellingness on my toes and my thighs. i will see what happens in the ultrasound. if all things fail, i will contact my primary care doctor as you suggested :)

Surgery 4/20/2021 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/20/2021 Zoladex (goserelin) Chemotherapy 5/27/2021 Surgery Hormonal Therapy
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May 4, 2022 05:24PM amy123 wrote:

ratherbesailing - thank you for your reply. i'm sorry to hear about your complications after the surgery. it seems like DIEP flap can cause some complications that people rarely talk about. my surgeron said he will do liposuction during the second srugery too. but i think i'm going to skip it to avoid further complications. if i knew i would have all these problems after diep flap, i wouldn't have it in the first place. SMH. you are right about the demial factor, i think it's probably a good idea to get in touch with my primary care doctor to get a referall. thank you and hope everything goes well for you!

Surgery 4/20/2021 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/20/2021 Zoladex (goserelin) Chemotherapy 5/27/2021 Surgery Hormonal Therapy
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May 4, 2022 09:25PM ratherbesailing wrote:

amy123, I wouldn't necessarily rule out liposuction because of my experience. In fact, my understanding is that lipo is sometimes used to treat lymphedema. But if you have had swelling, it is probably something to discuss with them. Wishing you the best with all this.

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