Topic: Triggers

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: Feb 2, 2022 11:37PM

Posted on: Feb 2, 2022 11:37PM

annake wrote:

Hi there

I am still quite new to this, so I thought I would ask fellow cancer survivors/patients what they have found has triggered their lymphedema?

My one collarbone is currently swollen and I have some pain all the way from there till down my arm.


Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Feb 4, 2022 02:35PM binney4 wrote:

Altitude changes affect my lymphedema control, and since I live in a huge valley, that means whatever direction I travel I have to deal with altitude at some point. Also air pressure, related to storms in particular. We've had women here in the past who have reported severe pain and swelling from approaching hurricanes, but as always with lymphedema, this may vary with different individuals. Certainly the daily fluctuations in air pressure can be problematic, but staying aware of them can help reduce problems.

Any injury, however insignificant, can also trigger issues, since our lymph system uses signals of injury or pain to send lymph fluid to that area to deal with possible infection. (Unfortunately, when we have a compromised lymph system that can mean fluid congestion that can actually contribute to infection risk instead of eliminating it, so it also pays to know the signs of infection and act on them quickly.)

Temperature is a factor. Summer is generally harder for lymphers to deal with and may require extra self-care to manage.

New or unusual activity may also be a trigger, and that includes such mundane things as moving the furniture around, turning your mattress or rearranging your book shelves.

Having a plan for dealing with flare-ups makes all these issues less problematic, and eventually it becomes easier to recognize and deal with (or simply prepare for or even prevent) the triggers that affect our individual situations. Hang in there--it gets better, honest!

Gentle hugs,

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Feb 5, 2022 05:01AM rah2464 wrote:

Lymphers ha now i have a new nickname

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 18, 2022 06:26AM blah333 wrote:

Driving also triggers it for me.... which now makes me want to die. Nobody told me two missing lymph nodes would rob me of being able to enjoy pretty much anything I do in life. All I was told was to avoid repetitive movements. I don't even get a swollen arm, just axilla pain and sometimes swelling on my trunk. When it happens it's unbearable and I can't think of anything else. I go to an educational hospital and feel quite certain I have lymphatic issues because I was stuck with an inexperienced moron. And I'm on medicaid, they don't even give me proper access to physical therapy. And when they did the woman only knew about arms, not trucal swelling. I'm in hell.

The thing that initally triggered it was just carrying a grocery bag. Now I can't read a book on my side in bed, WALKING triggers it, sleeping, and now road trips are ruined two. If I ever kill myself these two missing nodes / my terrible experiences at LAC USC Medical Center in Los Angeles will be a contributing factor. I used to be athletic, active, help friends move etc. and now I'm a cripple, and not even 40 years old. Breast surgeons are so ignorant and nonchalant about lymphedema, and NOBODY I know even knows it's "a thing." My peers are having the time of their lives while mine shrinks and my body feels like shit. I had no idea I'd be giving up an entire quadrant of my body just so some moron could gain some surgical experience.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Mar 18, 2022 05:14PM parakeetsrule wrote:

I'm sorry you are suffering so much and it's normal to want to blame someone. But nobody knows what triggers lymphedema in one person who had nodes removed and not another. It's random. Cancer and removing the nodes is what caused lymphedema, not your surgeon. I hope you are able to access treatment at some point. Even if it's just a few appointments.
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall
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Apr 5, 2022 03:59PM - edited Apr 5, 2022 04:00PM by bgross144

This Post was deleted by bgross144.
Radiation Therapy Lymph nodes Radiation Therapy Left breast Local Metastases Surgery Mastectomy (Right): Modified Radical Hormonal Therapy Faslodex (fulvestrant)
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Apr 6, 2022 06:21AM rah2464 wrote:

blah - driving can trigger me as well. I never knew I was a person that had a death grip on the steering wheel but now I do! I have to consciously manage that, as well as put more effort into my right hand (left side is Lymphedema side). That said, I wear a sleeve and gauntlet when I need to drive any distance. Sometimes I add a compression bra like the wear-ease Sydney. Makes such a difference for me.

I am sorry you are not getting the access to treatment you need. If you can get your lymphedema documented enough you may qualify for a flexitouch pump which will massage your involved areas. But I agree, the knowledge is woefully thin.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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