April & May 2015 Surgery Sisters

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited July 2015

    Hi All -

    I saw the lymphedema nurse practitioner today. She took some measurements of my arms and it doesn't appear to indicate any lymphedema of any type. Very good thing. She gave me some proactive information about lymphedema. She thinks that the area that I think is "cording" may be tendonitis. I don't remember doing anything that would have caused this to happen. She is more versed on the vascular (including the lymph system ). I don't know if tendonitis can be confused with cording. I guess I don't have any choice but to wait until my PT appointment in a couple of weeks. She should be able to tell if it is still a cording situation or not. Has anyone else ever had this type of explanation?


    MarieBernice6234

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  • treelilac
    treelilac Member Posts: 245
    edited July 2015

    A tendon is connected to a muscle. Will you be able to isolate the movement of one muscle and feel the "cord" tighten/moved?

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited July 2015

    Pretty picture, Katy. I sure look forward to the day I can walk farther than 30 feet! I know I will, but it sure is hard to imagine right now. Oregon coast is beautiful and not so hot as Florida.

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  • downdog
    downdog Member Posts: 1,432
    edited July 2015

    Holy shit, Jackbirdie, talk about setting the bar high for the rest of the sisters. Two miles in one day in your baseline condition? Absolutely amazing!! See what you are capable of when you push yourself? You should be justifiably proud of yourself. Beautiful pic. I am so glad you have such gorgeous coastline for scenic walks. Even better you've got hills! Not only do they provide varied and more interesting terrain, but you will burn more calories on them. Rests are fine, just like a mini-vacation - it's the overall distance that's important. A huge high five from me! Enjoy the time with your family! I like your new avatar photo - you look great in that hat.

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  • bbbbun
    bbbbun Member Posts: 59
    edited July 2015

    Oh Katy~ That is absolutely beautiful!!! Enjoy your stroll today!!! I'll be sending happy thoughts and positive energy to you!!

    We are going to pick up 6 year old granddaughter Scarlett on Friday and she will be here for 10 days Woo-Hoo!!!

    Hugs to all of our Sister Warriors!!! Fight on so we can enjoy more of this amazing planet ...and those we hold dear!!

    With love, Bunnie

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited July 2015

    Hi TreeLillac -

    Actually I am not sure if I completely understand your question. With the movement of my arm into certain positions, I can see some of the "cords" starting in the area of my armpit. There are still some movements that bother me. I will just have to wait until the 4th of August to find out what the therapist will say.


    MarieBernice6234

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  • treelilac
    treelilac Member Posts: 245
    edited July 2015

    My reasoning is that if you can isolate one muscle (e.g. by moving individual fingers/small movements) that tightens the cord-like thing, there is a good chance it's a tendon. I imagine a true cord is scar tissue; it would easily involve multiple muscles. That the scar tissue only forms along one muscle just seems less likely.

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited July 2015

    Hi TreeLillac -

    Thanks for the explanation. Yes, I still think that it is a cording problem more than a tendon problem. When the pain was at its worse a few days ago, I could feel the tightening in a variety of places. Not just in one place I will have to just wait until my appointment.



    MarieBernice6234


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  • marketingmama
    marketingmama Member Posts: 161
    edited July 2015

    Hi Ladies! Just thought I'd drop in to follow up on my most recent experience around PT for cording. My PBMX with sentinel node removal was May 21 (5 removed). I noticed symptoms of cording about 3 weeks after surgery (though had no idea what it was) and my BS diagnosed cording. My PT appointment was yesterday so a bit of time had passed from diagnosis to first evaluation. During that time I actually thought that things had improved and expected to hear that my issue was minor. Well I was wrong! My cords on the left side run down almost to my wrist and on the right, midway down the upper part of that arm (this side is decidedly better). I don't want to scare anyone but also felt it would be best to honestly tell you what I experienced during my first PT session. The pain was worse than almost anything I can remember experiencing. Wish I had taken pain meds and brough DH to drive me home. On my bad side the cord is very thick (wish I had started this sooner). The work they do is very intense and involves manipulating the cord under skin to thin it and hopefully break it down. My PT was lovely and does almost only Breast work (cording and lympedema) so I felt i was in good hands. But man did it hurt. She gave me breaks as needed but said that often the intense pain can quickly lead to significant relief. In my case that didn't happen because of the thickness of my cords (though my ROM is better this morning). She said the TEs make things even more difficult because the body/muscles carry a lot of tension when they're in. I'll be seeing her twice a week going forward and though it's not something I'll look forward to, I'm very glad I finally started the process. Cording only gets worse with time, and she described the cords like drains that have been clogged. Etiology behind all of this is that we now have fewer lymph nodes to do the work that all of them used to do----hence the remaining ones are more likely to get blocked up as they attempt to drain lymph fluids.

    They lymphatic system is fascinating and I learned a lot yesterday. If in doubt about cording, I encourage you to see a PT who specializes in Breast issues post-MX.


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  • magiclight
    magiclight Member Posts: 8,690
    edited July 2015

    Marketingmama thank you for sharing your experience. I agree that your post will not scare but rather inform people about cording. I think it is best to get to PT as soon as possible after surgery rather than waiting until you have symptoms such as you describe of cording running down to wrist, or even less than optimal ROM. I've read so many posts about BS's recommending waiting to go to PT and just do wall climbing exercises at home. Wall climbing while useful does not address cording and is very limited in that it is not full ROM of the shoulder. I am so glad you are now on your way to addressing your cording/pain problem with a full PT program and whenever possible women should go to "a PT who specializes in Breast issues post-MX."

    .

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  • marketingmama
    marketingmama Member Posts: 161
    edited July 2015

    Magiclight, so true about how docs view this. My PS said "I've never seen cording that lasts more than 3 months." I was shocked but think this is also indicative of how some MDs tend to think of physical therapy. Oh and my BS (whom I love to death) still said at one month (when he told me I had "a little cording"), to give it another few weeks before calling about PT with the idea that time and exercise on my own might solve the problem.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2015

    I was surprised to find out how few women are given PT as part of their treatment, too. Once my BMX was scheduled I received a call from the hospital to schedule 10 appointments with a LANA certified therapist. The first one was before surgery to measure my arms and my ROM. All of the rest were for post-surgery PT. It was just their standard of care, I'm sure my BS didn't think it was necessary. During my post-op appointment with my BS she asked me to raise my arms as high as I could (one week post-op). I told her the PT said I shouldn't until two weeks post-op in order to help prevent lymphedema. She just kind of chuckled and said, "Yes, I know, but just this once. Plus, usually only fat women get that." I loved my BS, but that was a bit shocking.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    There does seem to be a shocking ignorance between medical specialties. I know many fit NOT FAT women who've gotten LE.

    My favorite stupid Dr. story is my surgeon coming into my hospital room smiling broadly after surgery. So proud of his work (and yet I still have pain 8 months later). He went on and on about my great prognosis. Then a month later the MO says yes chemo. Yes recurrence is possible. More than slightly possible. Thirty frikkin percent possible.

    I wish he (the surgeon) would have simply stated the facts and wished me well. And I wish surgeons that work on cancers were required to take some continuing education in oncology. Too much bad information that turns into shock and big disappointment later. Or simply just refrain from opiningin areas that are not their specialty.

    SummerAngel- The comment made by your BS was rude...and just bs. Makes me mad.

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  • magiclight
    magiclight Member Posts: 8,690
    edited July 2015

    Jackiebirdie I'm so sorry that you are now 8 months post op and still in pain. I see that you are starting hormone therapy (not sure which one) in a few days and hoping that you are side effect free from that therapy. I've been on Tamox x 1 month and still se free, so fingers crossed.

    You make a good point about surgeons working with cancer patients having more oncology training. Oh my, another question I should have asked before surgery, but hopefully others can benefit from that insight.


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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2015

    Jackiebirdie, you're absolutely correct. My BS' comment was both rude and ignorant. Yes, overweight IS a risk factor for lymphedema, but so is genetic predisposition, many lymph nodes removed, radiation, etc. It's just like those who say that only people who eat poorly or have too much stress in their lives get breast cancer. It's just not true.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited August 2015

    Hello Ladies - been awhile - hope all is going well!

    I went on 2 week vacation -could not have been better and returned to work this week and started Chemo yesterday! Whew - insane! Chemo sucks but managing so far..

    marketingmama - so sorry your cording was worse than you thought - hope PT works and all gets better. My cording ironically went away while I was on vacation -wish I knew what I did right LOL.. I still kept and went to my 1st PT appt Tuesday - did not like her at first but warmed up to her - she did review all lymphatic system I found very fascinating too! She said cording can come and go and anyone can get lymphedema and anytime especially if nodes were removed and then having radiation which is me! Yeah! At least it went away for now - hope yours does too!

    Also while on vacation - left side boob/expander fell down some - you can actually see a dent in my chest where it slipped .. PS asked me with a smile what I did on vacation - no idea! He said he can just tac it up when he does the exchange which will not be until next year - ugh! I know I can be worse so not complaining but just a pain in the neck!

    Again - hoping all is well with all here! Sharing my chemo Day 1 pic fighting like a girl- I cut off my long thick hair in preparation (my hair = my terms) - not liking the short hair and missing my ponytail but I know it will all grow back someday :) XOXO Mary

    image

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  • magiclight
    magiclight Member Posts: 8,690
    edited August 2015

    mdoc: Keep fighting like a girl and looking like a beautiful woman even without a ponytail. A journey of a thousand miles begins with the first step - Lao Tzu. You are on your way and good luck.

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited August 2015

    Hi All -

    I am going for my cancer PT assessment on Tuesday, August 4th. It is interesting that someone said the cording can come and go, .My painful movement does seem to be a better. I will let her make the assessment, though. I am sure that she can also redetermine if there is any signs of lymphedema. I will post my results on Tuesday night.


    MarieBernice6234

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  • Shematters
    Shematters Member Posts: 2
    edited August 2015

    May 26, BMX w/TE

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2015

    shematters, share a bit more information about yourself when you get a moment. How are you doing now?


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  • AudreyB
    AudreyB Member Posts: 377
    edited August 2015

    Mary, love, so nice to see you. Good luck with you chemo. I hope it goes easy for you. My right TE moved around in a circle and the port is now under my armpit (arm movement causes constant discomfort) and I have a ridge across the lower part of breast right under where nipple wound be. It looks just lovely.....not. LOL.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited August 2015

    Aubrey - thanks and thanks for sharing about your TE .. my left one now is constant discomfort and bums me out that I will have that til sometime next year .. Chemo should end if no delays in December then have to have Rads then they can start to talk about exchange ..seems so far away. Don't want to complain as I know so many have it so much worse - thanks for listening!

    Chemo is going OK - rough day on day 1 on Friday .. better from the steroids yesterday and wiped out today .. managing thru it with the help and tips from so many strong women here .. don't think I would have managed the last few days without all that I have learned from so many here ..

    Hope you are well and all other surgery sisters .. Stay Strong

    Mary

    PS - I hate my short hair - LOL

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited August 2015

    Hi All -

    Just had an evaluation by a cancer rehabilitation specialist as well as someone trained in lymphedema has revealed that I do have "mild" cording and/or scar adhesion that are presenting with the same symptoms. I also have mild lymphedema - grade 0. I will be getting a sleeve within a week or 2. I have to wear it initially for two weeks or so. Then use in special situations such as flying which I will be doing in October. At least everything is "mild" that is the best time to catch it.

    MarieBernice6234

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  • april25
    april25 Member Posts: 772
    edited August 2015

    I have some mild scar adhesion at my SNB incision. When at a BC Wellness meeting the PT there wrote me a prescription for PT because I mentioned that the only problem was a slight rubbing in the area so that it feels it's slightly swollen... but I have no pain and have regular ROM... I don't really think I need PT. But should I go anyway, just learn some exercises or whatever to maybe prevent LE?

    I only had 2 nodes removed, but I keep hearing that it doesn't matter, that LE could happen even with that (and radiation, which I also have had)...

    Or should I just not worry and take care of it if I do start feeling pain and problems with ROM? (Yes, I'm feeling paranoid! It's just that all of this stuff is so new--it's hard to know what to expect!)

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited August 2015

    Hi, April25 -

    From what I have experienced so far, I would say that there probably wouldn't be anything to lose by going for an evaluation. Would that PT be specializing in cancer rehabilitation? Sometimes they can pick up and detect things that others may not. Like you, technically I only had one node removed - followed by 34 radiation treatments.

    It is so much better to catch things when it is "early on".


    MarieBernice6234

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  • marketingmama
    marketingmama Member Posts: 161
    edited August 2015

    I think a PT eval is very helpful. I wish I had done mine sooner in the process. Definitely better to identify it early if there is any risk. And agree that it's really important you see someone with special training in breast patients.

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  • downdog
    downdog Member Posts: 1,432
    edited August 2015

    Hello sisters! I hope you are all doing well. Best wishes for optimal outcomes and quick recoveries for those having exchange surgeries this month.

    april25, you can massage the scar yourself or have a PT do so and show you how to do it yourself. I would recommend a PT who is also a certified lymphedema therapist. It is possible to develop LE with the trauma to the lymphatic system of sx alone with no nodes removed, but this is uncommon. The risk increases with every node removed and nodal irradiation increases your risk, but to a lesser degree than the loss of nodes in an ALND would. If it's a viable option for you, pre-emptive knowledge and avoidance measures can only benefit you. Here are a couple of links to search qualified lymphedema therapists. The PT association in your state may also have a search by specialty, such as breast cancer rehab. You want a PT who has LANA certification for lymphedema as well.

    http://www.lymphnet.org/find-treatment

    http://www.clt-lana.org/search/therapists

    I had my 3 month follow up with my PS yesterday. I am so happy with my results and the Allergan anatomicals. They are firmer than real breasts, but that doesn't bother me at all. I am not even aware of them - they feel a part of me. My breasts look fantastic naked. I was perfectly content with my natural breasts, but these truly are nicer. Despite the fact that you can see my ribs, I have minimal drop off, and am surprised to not have rippling with skin flaps a tad over 1 mm in thickness. I continue to do pec workouts, as my pecs provide coverage of the transition at the top of the implant. One and done for the sx - no revisions, just replacement one day. My PS will follow me annually, as will my BS. Sensation-wise, they are still pretty lacking. I have sensation around the outer perimeter, but it decreases drastically moving in toward the nipple. It is deceptive to test breast/nipple feeling with my own fingers, as I believe I can feel more than I really can, but it is the tactile sensation in my fingers rather than breast sensation. I ran an ice cube over my breasts and couldn't even detect the coldness in the central areas. I can detect pressure - it reminds me a bit of an epidural and childbirth. Awareness of pressure, but no feeling. My PS says it's still early and give it a year to see to what extent nerves will regenerate.

    I was a bit reluctant to post this and be an alarmist, but bco is real and raw. I am done with tamox. I have always thought that the one size fits all 20mg for everyone was ludicrous and did not want to shock my body with sudden hormonal changes. I am not on any other Rx drugs and don't even take OTC drugs, until recently. I took 5mg of tamox for 3 months and then upped my dosage to 7.5. My plan was to go to 10mg at 6 mo (none of this MO endorsed). I had achy leg cramps 24/7, vision changes (blurred at times and decreased distance), and some minor GI issues initially, which progressed to major. I did not experience any hot flashes or mood changes. I began taking 7.5mg 3 wks after sx, so whether I had a late manifesting ultra-sensitivity to the antibiotics (Kelfex is not a strong antibiotic), or in combination with the tamox, whammo, I got the mighty D in spades à la chemo SEs. At its worst 9 Imodium (8 is max daily dose) plus 5 shots of Pepto-Bismol had zero effect. It was like a colonoscopy cleanout. I had had a delayed happy 50th routine colonoscopy Aug 2014, which ruled out colon diseases as the cause. I took Pepcid AC for 2 weeks and went through Costco 84 packages of Imodium. Couldn't leave the house for a few days, then had to plan short trips knowing where every public bathroom was located. I wore maxipads 24/7 for accidents. I had an iron gut pre-tamox and could eat anything. I've cut out dairy, gluten, am eating lots of probiotics and fermented foods (lots of Bubbie's sauerkraut and organic coconut milk kefir - not so crazy on kimchi). I took a tamox holiday for the month of June and resumed 5mg July 1. By late June my guts were about 90% healed. Then July 24, the D returned, just not as severe. So back to square one in reestablishing my gut flora. I attributed the D the first time around to the antibiotic wiping out my gut flora, but the reappearance has sealed it for me. I can't tolerate the tamox. The first time around I was tested for C Dif and a whole bunch of other fecal tests that all came back negative. (It is awfully difficult to collect poop samples when a stream of water is gushing out of your butt!!). I took the tamox for my husband, but the constant leg cramps were enough for me to consider quitting. I am way too fit and active to feel like I'm 85. The vision changes scared me more. At first I thought: is this cause and effect? or eye changes due to aging, but after researching it, I believed it was the tamox. SummerAngel, my vision rebounded in June when I went off and has come back now after quitting July 24. I read your post about your opthamologist saying the macular toxicity can be permanent with long term use. The only eye related SE I was told about is the possibility of cataracts. I find the macular inflammation and crystal deposits far more concerning. I still have the leg cramps today, so 14 days later this drug is still affecting me. Tamox excretion is primarily biliary (gall bladder via liver metabolism) and has a 1/2 life of 5-7 days (50% active tamox metabolites will remain in your body beyond this 5-7 days). But the D is the kicker and definitely makes it NFW for me. I can't imagine how bad my SEs would be on 20 mg. I would be on IV hydration in the hospital with a hose hooked up to butt running directly into the toilet! I see my soon-to-be-former MO next week and it will be interesting to hear her response. Probably that she has never heard of D as a SE. I have read that the compliance with tamox is less than 50%, so lots of women find it intolerable. We really need new drug options.

    Drugs are dosed by weight for infants and children. Chemo and anesthesia are dosed by weight and body habitus. We are flying with our dog and the vet not only dosed the anti-anxiety by weight (just like all veterinary drugs), but considers my dog an athlete and reduced the dose to 50% for her weight to deliver an 80% effectiveness. Since tamox is off patent, no one has the financial motivation to fund different dosing regimes, so we're going to be stuck with the 20mg one size fits all.

    For those of you ER+, I wish you all well in tolerating these hormonal therapy drugs with minimal SEs and hope you have a better experience than I did. I am mentally comfortable with discontinuing tamox. I have moved on from this bc phase of my life and will completely do so once my guts are fully restored again. Namaste

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    Downdog, I completely understand. I, too, didn't hear about any eye complications except the possibility of cataracts from my MO. Once I looked up the full list of SEs and studies related to the eyes and tamoxifen, though, I found quite a few eye complications. They are not very common, but my eye doc has seen plenty of women with these. The eye problems were definitely my biggest concern as well, followed by the severe pelvic pain and pressure - which has also gone away since stopping. I've decided to stay off of it until after my exchange surgery, then try 10mg and see how that goes. (I also agree about the "one size fits all" dosing. It makes no sense!) Funny, the only SE from the tamoxifen I liked was that it tends to be constipating - it made me much LESS likely to have diarrhea! If I have to stop the tamoxifen altogether I will. It's very rare to have a recurrence with my stats.

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  • april25
    april25 Member Posts: 772
    edited August 2015

    MarieBernice6234, marketingmama, downdog -- Thanks for the tip about seeing a PT (specialized) for lymphedema exercises, etc. I think the PT specialized in BC and associated things, so that would work. I guess I might contact them after all, since I definitely would like to know if there are exercises and if I might have some slight things going on around my SNB scar (it doesn't hurt, but it IS slightly puffy still). I'm finally done with RT so I have some time to think about these sorts of things! Yay/Sigh. Sometimes it's hard to know when I should be more pro-active about such things! I usually tend to let things go until they are pretty bad (which, I guess, is why I found myself in the ER twice during chemo...! But not, crap like that just happens with chemo, I think!).

    downdog -- Sounds like some life-impacting SEs going on! It's good to know these things, particularly when they are not SEs that are noted... because, really, all kinds of things can affect individuals differently! I had bad D during chemo, so I totally know how awful and dangerous it can be, since I had to have constant IV drips for weeks on end. UGH. I'm only just starting to get rid of the bad D now and my chemo ended over 3 months ago.

    --

    Do you think the hormonal treatments SEs differ if you are pre or post menopausal? I'm just post-menopausal and have been through the hot flashes and all that already... I can't imagine having them start up again!

    I haven't started hormonal therapy yet, but will soon since I've just finished RT... I think I'm getting Femara, but I'm not sure... Is that an option for those who aren't tolerating Tamox, or is it just as bad or not treating the same thing?

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  • magiclight
    magiclight Member Posts: 8,690
    edited August 2015

    Downdog: I'm thinking of getting off Tamox after only about 2 months due to some intermittent blurring of vision and the very very early early symptoms of possible foot neuropathy. I walk daily without any foot pains until the last couple of days and have noticed that by the end of the walk have tingling in one foot. Again, it comes and goes and even while sitting here at computer I notice some very slight tingling in one foot. If this continues I will stop tamox because I am not willing to give up on the limited physical activity I'm now doing. Quality of life is so important to me and tamox only gives me about a 5,4 benefit improvement while I have a 22% change of dying of something else. You are right, the drug options are minimal, I'm definitely not young, and the odds are in my favor even if I go off the rx. I'm thinking I'll make a decision soon for fear that once the neuropathy or vision problems set it they may be permanent. I'm already on Neurantin for post mastectomy issues and do not want to add additional side effects. Each of us has to make our own decision based on our own life goals and clinical probabilities of recurrence. Not an easy choice at this time, even though when I was initially diagnosed I was sure I would not take tamox. Just another fine mess!


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