Follow-Up To "NOW I Need A Compression Bra?"

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Blessings2011
Blessings2011 Member Posts: 4,276
edited June 2014 in Lymphedema

Hi, Ladies! 

Last month I posted a new topic titled Four Months Post Exchange - NOW I Need A Compression Bra? I'm so grateful for the answers I got.

I have some new information, and would love to hear your advice.

I am now five months out from my exchange from TEs to permanent saline implants.

I had TONS of pocket work done at exchange, and consequently, had more pain and more restrictions than other women usually do.

One thing that really bothered me was the large accumulation of swelling above my left implant. Righty looked fine. Lefty looked like a small animal trying to climb over my left shoulder.

The surgeon told me it was just excess fluid from all the work he had to do at exchange, and that eventually it would reabsorb into my body, although it could take months.

Two months ago, I saw the LE specialist (LANA Certified) at the hospital (Kaiser) for two reasons - the swelling, and some pain I was having.

She kind of blew off the pain (said I just needed to stretch my pectoral muscle more), but immediately ordered me a Belisse compression bra and Jovi-Pak lumpectomy insert to try to reduce the swelling. She said she doubted that it was just fluid from the surgery, and was probably LE.

I had met her once before, and liked her, and had no reason to doubt her.

However, I “only” had an SNB during my BMX with TEs, so the possibility of LE was greatly downplayed from the very beginning. What I learned about LE I’ve learned here on this forum.

I’ve never displayed any of the classic symptoms – my skin is loose and wrinkly, my rings and watch spin around, I have no arm swelling, no denting…..the only swollen place on my body is in my upper pole of my left boob. (Yes, I am calling the New Girls my boobs. They are now mine for life, so I may as well take ownership of them.)

When I later picked up the Belisse bra and tried it on along with the insert, it fit just as poorly as the sample did before I ordered the one for me. (At least my insurance covers it, those things are expensive!!!)

She handed me a three-page list of LE exercises, and told me to wear the compression bra and insert 8 - 10 hours a day. She made no follow-up appointment.

Keep in mind that this woman never once laid a hand on me!

The pain in my left boob got worse, so I made an appointment with a local Myofascial Massage Therapist and Certified LE Therapist. (She was not in the Kaiser system; I pay cash.) She works out of a local woman Breast Surgeon’s office. The majority of her clients are breast cancer patients.

She listened to me carefully, read my surgical report (!), did a thorough exam, then told me that most likely the swelling WAS from the surgery, and that it was more common than people thought. She said she saw it a lot.

She also went on to say that I while I didn't fit the technical criteria for having LE, there was a reason that the fluid had stayed in one place for so long - it had nowhere to go.

For that reason, she gave me four simple MLD exercises to do several times a day. We also fashioned a compression bra made up of components I had on hand...one that would address the specific area of swelling that was bothering me.

She said that before you could fill the bathtub up with fresh water, you had to empty the old water out of it; hence, the LE exercises would be important for me to do daily before I did any compression.

As for the pain, she attributed that to the lateral capsulorraphies the PS had done to narrow my pockets at the time of exchange. (My permanent implants were much narrower than my TEs, and he didn't want them to migrate.)

The new therapist said that I was pretty much stitched everywhere around the pockets, and probably tacked to my ribcage, so of course I would feel like I was wearing an Iron Bra.

But the good news? She said she could help me!!!!!!

The first time she did Myofascial Release, it kind of hurt, but in a good way. I could tell a difference the first day she touched me.

She also gave me exercises to stretch out my serratus muscle, which is where she thinks the pain is originating. The searing, tearing pain is now an annoying pinch.

She also does scar tissue mobilization, and the skin underneath my incisions has never been thinner or felt more healthy.

She is also going to try to use Kinesio Tape on me at our next appointment. She says that the swelling is SO specific to one area, she thinks that we'll have better luck directing the fluid with the tape instead of a makeshift compression garment.

I'll just have to make sure I use an adhesive barrier wipe prior to using the tape. I don't want it to be like duct tape over my sensitive boobage!!!

SOOOO – any of you LE veterans out there have any ideas on whether I’m heading in the right direction?

I have to admit, I sure am feeling much looser since she started doing the massage on me. And I’m staying diligent as to LE precautions such as no BPs, no blood draws, no injuries on the affected side.

Would love to hear your thoughts...thank you SO much!!!

Comments

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2013

    Blessings, what the heck was up with the Kaiser person?? We've heard issues about Kaiser doing LE therapy by giving out a DVD...

    I think you have a trapped pocket of fluid from the surgery. Is this LE, well kinda, because it's trapped fluid.

    I'm currently seeing a LMT who is an RN and trained in LE and she's doing myofascial work on my scarred down side. My LE therapist is an LMT but she doesn't do myofascial work, and after three of my doctors noted how stuck down I was, I thought it was time to address it, and was terrified it would make my LE worse, but actually (knocking on wood here), it's helped. I see each LMT every other week. And my tissue is SOOOO much looser.

    I think you're totally on track.

    Yeah, with the pocket of truncal fluid, you're at higher risk for LE to show up in the arm, but it's not there, so just be diligent.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2013

    Kira - Just an update: I have been seeing my new therapist for only a few weeks....and it's working!

    The exercises she has given me have almost completely eliminated that pulling/pinching/tearing sensation under my incision. (That was a relief, since the PS said it could possibly be from the implant being folded over.  SAY WHAT???)

    Last week the therapist called in her seamstress - a sweet, older lady (also a BC survivor and LE patient) who took my measurements, made a pattern, and went home with my useless Jovi-Pak to customize it. 

    Two days later she had it ready. She added a whole new section to it to cover my excess fluid, rearranged the Jovi-Pak with the channels going in the right direction, and even stuffed more foam into some of the channels where it was too soft. Best of all? She charged me $20.

    I wear the new custom pad at night under my sports bra, with a Spanx knockoff tank worn BACKWARDS to provide even compression over that fluid-filled area during the night.

    Most exciting has been the Kinesio Taping. The first night I wore it, I woke up looking at the skin on my boob with little tiny wrinkles in the tape and in the skin. It's always been so swollen, the skin was always puffy and shiny. 

    I took more pics today (for anyone on the Picture Forum) and FINALLY - I am seeing the symmetry I thought I would never see. I am just amazed.

    I will continue to do the stretching exercises she gave me, as this will help with the Iron Bra feeling leftover from the lateral capsulorraphies the PS did at Exchange. I also want that pinching sensation to disappear completely. BAH on folded implants!!!

    And I'll continue to do the MLD exercises, as she says they are very helpful for people with fibromyalgia, which is either coming back, or else I am feeling the first SEs of the Anastrozole. Yell The MFR will be helpful for that, too.

    Are you still getting relief from your MFR work?

    I told my therapist I would sign over my Social Security check to her just so I could keep getting those massages!!!

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2013

    Blessings, I'm so glad! And the seamstress for $20 is priceless.

    I am both enjoying and getting relief from the myofascial work. I now realize that there was a ton of scarring and radiation fibrosis. It took a session or so for me to trust her, but she's partially Vodder trained and my arm measurements have gone down! and my chest wall doesn't feel like a hard pencil eraser anymore! And, it's very very relaxing. Even when it pulls, it feels good.

    I alternate: one week with the LE therapist and one week with the myofascial one. I'm high maintenance, but it's working.

    I need to be more compliant with my personal MLD. I've slacked off and I notice a difference.

    We were smack in the middle of the east coast blizzard and had no power/heat/hot water for a day, and that wasn't fun at all. Not ready to live off the grid...I'm appreciating the heat/hot water/lights.

    Thanks for the update. Good news is always great!!

  • hugz4u
    hugz4u Member Posts: 2,781
    edited February 2013

    Kira, Funny that you say myofascial work is good for you because I just started up with my myo/cranial physio for my back/hip last month. First thing the physio said is we need to loosen up your diaphram to get you breathing proper, the rads scarring and back injury is making me tight in the diaphram area etc. After the first treatment I was breathing easier. Proof it works. Tina here had success too. I have always known that myofascial is my treatment plan but for the last 6 months I was trying to fix my back with chiro. It did help but I feel sooooo.... much better with the myofascial. My  immediate family is prone to soft tissues injuries and this is the way to go. I had myofascial done right after my BMX and it was such a success. NOT CHEAP TREATMENT though.

    For those that don't know what it is, Picture your body being on a stretcher rack. When the therapist pulls certain body areas it stretches your connective tissue throughout your body. This loosens you up. Your connective tissue runs from you toes thru your whole body. It's kinda like releasing a elastic band but very gentle. 

    The other day I was wondering if anyone has heard any studys on rads and myofascial release. I was thinking that the rad docs should recommend it if there are any hard core studies. It just makes sense to me to loosen up all that scarring. 

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2013

    Oh, Kira - hope by now you are back on the grid, and warm and cozy!!!

    I suck at my personal MLD. I do it maybe twice a day...should do it more. And I know I need to do a lot more frequent stretching of the pec and the anterior serratus muscles.

    This morning I printed out a page of pics for the therapist.... kind of a photojournal of how I looked after exchange... 72 hours, one month, three months, five months (all before I started to see her), and then two pics showing the huge difference in just 3 weeks of LE therapy (MLD and compression) and MFR, and two sessions of Kinesio Taping.

    The results were astounding.

    Today she did a lot of MFR, and it hurt like heck, but afterwards I felt soooo loose!!! Once we have the fluid issue under control, we'll move our focus to eliminating the Iron Bra feeling.

    How long do you plan to keep going to your MFR therapist? Do you see an end in sight, or do you think it's something that will need to be maintained in the future?

    At this point, I just can't imagine stopping ...

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2013

    Me neither. I seem to get benefits from it, and she is just so relaxing and I feel so cared for. I adore my LE therapist, but we chatter throughout the MLD session--which is superb--the other LMT demands absolute silence and relaxation and she has done such a great job lossening up my residual cords/my pecs/my fibrotic breast tissue, I don't ever want to stop.....

  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2013

    Hugz, I didn't see your post. In my experience, working with the rad oncs for three years, they didn't give a hoot about the fibrosis and skin and tissue changes I saw routinely. Nor did they care how much radiation they delivered to the level I/II nodes with standard tangents.

    When Otis Brawley came to talk at the local med school (medical director of the American Cancer Society), one of the deans told him how his mother was treated with head and neck radiation for a non-radioresponsive tumor and the side effects were horrible, and her final years were full of misery. Routinely, I saw over treatment, IMO. (And since I left, that impression has been seconded by physicians I trust.) Now I got my rads at another practice, and that rad onc, while sweet, flat out told me that radiation NEVER caused LE....And I came into rads with LE.....She could have paid more attention to the tangents...

    Recently, I found articles that chemo and rads work via the mitochondria, not the over simplified "they kill rapidly dividing cells" and this explains a lot of the side effects of both

    http://www.cancer.gov/ncicancerbulletin/010813/page6

    I am not a radiation oncologist, I just "played one on TV"--worked for one for three years taking care of his patients, before, during and after radiation. It was fascinating work for me.

    Just found this article about lower dose radiation harming less normal tissue, too late for me....

    Family Practice News

    AN ANTONIO – A lower-dose, briefer radiotherapy regimen than is standard for early-stage breast cancer in the U.S. demonstrated comparable efficacy with fewer side effects at 10 years of follow-up in a pair of landmark U.K. studies."Long-term follow-up confirms that a lower total dose of radiation in fewer, slightly larger fractions delivered over a shorter treatment time is at least as safe and effective as standard 5-week schedules of curative radiotherapy in women with early breast cancer," Dr. John R. Yarnold declared in presenting the latest data from the U.K. START (Standardization of Breast Radiotherapy) trials at the annual San Antonio Breast Cancer Symposium.

    Dr. John R. Yarnold

    The historical standard of care for radiotherapy in patients with surgically excised early breast cancer is 50 Gy delivered in 25 fractions of 2.0 Gy each over the course of 5 weeks. That’s still standard practice in the United States.

    In the United Kingdom, however, the standard nationwide is 40 Gy in 15 fractions of 2.67 Gy over 3 weeks. Radiologists term this "hypofractionation": delivering a lower total dose of radiation using fewer but larger fractions. Hypofractionation has standard practice in the United Kingdom since the National Institute for Health and Clinical Excellence–issued guidelines to that effect in 2009. Those guidelines were based in large part on the earlier, highly favorable 5-year outcomes of START A (Lancet Oncology 2008;9:331-41) and START B (Lancet 2008;371:1098-107).

    The START investigators deemed it essential to conduct the new 10-year analysis because adverse effects of radiotherapy given for breast cancer can arise after the 5-year mark. Also, it was important to learn whether the early antitumor effects of hypofractionated radiotherapy persisted, explained Dr. Yarnold, professor of clinical oncology at the Institute of Cancer Research, London.

    The two key findings at the 10-year mark of START are, first, that both breast cancer and the dose-limiting normal tissues respond similarly to fraction size, so there’s no advantage in continuing the 2 Gy fractions that have historically been the international standard; and, second, that a 15-fraction/3-week schedule is gentler on normal tissues and comparable in antitumor efficacy to a 25-fraction/5-week regimen.

    The clinical implications are clear, Dr. Yarnold emphasized: "Patients can safely be treated to a lower total dose with fewer fractions than the historical standard of 50 Gy and 25 fractions. There are no detrimental effects of hypofractionation noted in any of the subgroups studied."

    The 10-year rate of moderate to marked adverse treatment effects on normal tissues in START A survivors who received 39 Gy in 13 fractions over 5 weeks was 43.9% compared with 50.4% in those randomized to 50 Gy in 25 fractions over 5 weeks. The resultant 20% relative risk reduction with a lower total radiation dose delivered in fewer fractions was statistically significant. In contrast, the 10-year locoregional tumor relapse rates in the two groups were similarly low.

    At 10 years in START B, patients who received 40 Gy in 15 fractions over 3 weeks had a 37.9% rate of moderate-to-marked adverse effects on normal tissues, compared with a 45.3% rate in those who got 50 Gy in 25 fractions over 5 weeks, for a highly significant 23% risk reduction. The relapse rate was 4.3% after 40 Gy and 5.5% after 50 Gy, a nonsignificant difference.

    In both trials, all types of side effects involving normal tissues were significantly less common in the lower-total-dose, fewer-fraction groups. That includes brachial plexus injury, which has been a concern expressed by supporters of the historical standard regimen, Dr. Yarnold added.

    Radiologists and surgeons in the audience called the 10-year START results "very, very important" and likely to be practice changing.

    Canada has already switched from the historical standard to 42.5 Gy delivered in 16 fractions over the course of 22 days. Asked if he thinks U.S. radiologists, too, should change their practice in light of the START findings, Dr. Yarnold was diplomatic. "I foresee no scientific reasons why they should not consider that very carefully," he replied.

    Follow-up will continue in the START trials, which are funded by the Institute for Cancer Research, Cancer Research UK, the Medical Research Council, and the National Cancer Research Institute. Dr. Yarnold reported having no financial conflicts.

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