April & May 2015 Surgery Sisters
Comments
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Mdoc and Marketingmama, I also experienced that feeling in my left arm, just the way you describe it. I didn't even know there was a name for it and I never asked anybody about it because my BS told me it will take a month or two to get the full ROM back so I wasn't stressing out about it. It seems to be going away gradually without my doing anything special. Even just a week ago (4 weeks postop), I couldn't straighten my left arm with my palm twisted away from my body because it would feel very unpleasantly tight and painful inside the elbow. After reading your posts just now, I tried doing it and I just realized I can now straighten my arm and also raise my arms straight up without any pain under the armpits. So it seems at least some of us can overcome this without PT. Hope this is encouraging to you.
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Thanks MaryAgatha. That's encouraging---though I'm 6 weeks postop and still no improvement, even with my daily stretching. I plan to give it another week or two and if no improvement, will reach out for PT. it's bad timing of course as I start back to work on Monday....hate to have a bunch more out of office appointments (in addition to fills).
Anyone else feeling weird about going back to work? I work from home so I'm not worried about strange looks or anything, just I guess not looking forward to the stress and pressure.
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marketingmama
I went back to work 4 weeks ago. I had so much anxiety before thinking about the stresses, etc. But it was the best thing for me mentally. I feel like myself again. It also gives you something else to focus on other than this roller coaster ride we are all on. I still feel really tired at the end of the day and even take naps in the middle of my long days so don't be surprised by that. I hope you can still get some rest and take care of yourself. And I hope you find it as positive as I did.
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Axillary Web Syndrome (AWS), aka cording, has been identified as an outcome of breast cancer surgery, but has been poorly studied (few studies, small sample sizes). There is an abundance of 'may', 'appears to', 'possible' non-conclusive language in the studies (the majority are after 2000), many of which are undertaken and written by PT professionals. It frequently develops within the first few weeks following surgery and presents as a visible cord underlying superficial tissue in the axilla, affected arm, or chest wall that causes pain and limits upper extremity movement. It is most common in the axilla (biopsy/dissection site) with 40%+ having cords extending to the elbow. Much less common is cording to the base of the thumb. A pulling sensation is noticed when lifting the affected arm to the side, straightening the elbow and flexing the wrist. The time period AWS most often develops is 2-4 weeks post ALND and SNB surgery, with earlier and later onset both possible. The incidence of AWS has been reported to be lower in women with a higher BMI. An obese person with a BMI of 32 has one third the odds of developing AWS as does a woman with a BMI of 24 (near the top of the normal range). Although, women with a high BMI are at higher risk for developing lymphedema.
There are reports of the cord appearing to resolve on its own by 3 months following surgery, but others believe that the cords may not completely resolve without rehab therapy, leading to long term restriction of the shoulder and upper arm.
Both women with and without AWS may experience persistent post-surgical pain. Different types of pain have been described by women with AWS; however, a pulling sensation is consistently described. It is hypothesized that as the lymphatics attempt to reestablish lymphatic flow during the healing process, the lymphatics become adhered to the underlying tissue. In this case, a structure would not be identified by ultrasound as the lymphatics would not be visible. The cord like structure would be an existing lymphatic vessel tethering itself to underlying tissue in the areas attempting to reestablish lymphatic flow. It presents as a visible or palpable band resembling a cord. Cords may present as small ropes, but more often are thinner, like guitar strings. Cords can resolve on their own without PT intervention, while some cords persist for years without treatment.
There is a lack of consistency in the limited literature that exists. So while it could be stated that PTs have a vested interest in promoting their services, IMO, consulting a PT who is also a certified lymphedema specialist is a good idea, if it is viable for you. The etiology of cording is not known. There is no documented proof that cording is a precursor of lymphedema. The samples of women studied are small and the reports are observational without standardization. Many women are not counselled about cording by their surgeons, so awareness and self-identification are issues. It is my belief (my background is in nanotechnology engineering; I am not a medical/health professional - just an informed patient) that injured lymphatic vessels will become congested when trying to re-establish lymphatic flow through collateral pathways and that congestion can pose a risk factor for lymphedema. That doesn't mean you will get lymphedema if you have cording. I am a big proponent in utilizing whatever professionals are available to you to facilitate the best recovery possible. Lymphedema specialists can teach you MLD techniques and also massage scar tissue. As instructed by my PS, I have been massaging my incisions since week 4. I also have my PT do scar massage. Mine are very soft and have an almost unnoticeable feel at almost 10 weeks, with the exception of my drain sites, which are still hard. Scar tissue is inflexible and will tighten and can be painful, so it is preferable to take preventative action; however, even if you don't, it can be broken down years afterward, but the process will take longer. It is like a bird's nest that can be crushed, rather than a solid mass.
Women who do not have AWS will have restricted arm movement and tightness post-surgically as they work to regain their arm and shoulder range of motion. Stretching is beneficial and if you do not have full ROM after 3 months, you may want to consider consulting a PT. If you do have AWS, you can help yourself by stretching, moist warm heat (just like those showers marketingmama has suggested) and massage. Like most things, early intervention is beneficial.
Sending wishes of smooth transitions for those heading back to work. Happy 4th and have a great weekend everyone! Take care of yourselves.
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DayLily, hope you are doing well. That's impressive you are swimming through chemo. Try and keep it up as long as you can. Just give it your best effort; you can't ask anything more of yourself. Hugs
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Downdog, thanks so much for the additional info on cording. Very helpful. As for work, I think you're right that I'll feel more normalcy once I return. I guess it just feels a bit like I'll be jumping into cold water. Painful at first but comfortable once you start paddling!
Happy 4th ladies!
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MaryAgatha - thanks so much for sharing your issues on possible cording - that it can go away in its own! Good to know!
Downdog - you are a GEM with funding & sharing all pertinent - nice to know that it seems like cording is not a precursor to Lymphedema! I did get an appt with a lymphedema therapist to do baseline & discuss the cording! The earliest I could get was 7/28 so we will see how it is between now & then!
So had to have a few tests now to prep before chemo start on 7/31 - leaving on vacation for 2 weeks next week!
PET Scan came back all clear 👍
Had MUGA scan yesterday which was not fun since you have to keep arms above head for 20 minutes - armpits throbbed all night!
Had prelim Bloodwork done & all looks good - I can see all results on my patient portal - except one result looked outside the normal range - Eosinophils % of total WBC - the normal range is between 0 - 7 and my result was a 13! Have not talked to Nurse yet about results - curious if anyone here knows if I should be concerned or could it be up due to 5 weeks post-op! Not too worried but curious!
Happy 4th to All! 🍦🍉🍔🍺🇺🇸🇺🇸
Mary
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hi ladies!
I am 6 weeks post op today and feeling great! I have been back to work for 4 weeks, and returned to the gym 3 weeks ago. I have healed nicely, and just have some tiredness at the end of of the day. I am scheduled to start rads next week, so the real fatigue will be back soon.
Wishing you all a Happy 4th!
~Midgie
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I'm almost 6 weeks post op for BLM, no reconst. About 3 weeks ago I pushed my BS for a PT referral and glad I did. Advantages of having PT, in addition to the supervised exercises, are that they are very supportive, instructive and give objective measurement feedback on progress. I thought I was not progressing rapidly but they can measure the progress and that was encouraging. Doing the recommended exercises at least 2-3 x a day while in PT and continuing now that I've finished PT is a must for me so I do not tighten up again. If you really are not progressing, then a 2 week delay may not be advisable. Good luck with your return to work and cannot give advise in that area as I am retired.
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Mary, YEA! Clear PET scan! I had a lung CT scan this week and it came back clear. Sure is a relief to get these results!
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So Agree mysunshine when nurse called with the results of the scan I was a little nervous answering since she was calling less than 24 hours Later! She said they like to call right away when there is good news - Whew! Congrats to you too on clear lung scan 👍👍👍🙌🙌
Mary
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Mary and MySunshine- so glad to hear about "clear"! Enjoy the weekend now, hear
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Hi everyone! While quiet, I have been checking in regularly and I am so glad to see all the good clear reports and that everyone is basically doing well.
Today is my birthday, 55. As a gift to myself, I did not put a bra on today. LOL. This BC thing has its perks (yes, pun intended).
Seriously, one of the many blessings I have experienced this year, is having met all of you wonderful, courageous women. Your friendships have meant the world to me. I know none of us wanted to be in this club, but we sure do make the best of it!!!!!!
Blessings to all.
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Happy Birthday, Audrey! Hope it's filled with perks of all kinds. Enjoy your day
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Happy birthday Audrey, I love not wearing a bra and always have, it is not quite so easy now only having one breast but still possible. Enjoy your day.
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Mary & Mysunshine48 - Woohoo! Great results! (doing the happy dance!)
Happy happy birthday Audrey!
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Have a wonderful birthday Audrey
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Happy Birthday Audrey!!!
Great news with all the clear scans!!! Awesome...
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🎂🎈🎁 Happy Happy Birthday Audrey - hope you have an awesome birthday
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Audrey - Happy, happy birthday!!! So glad you're my boobie sister!!
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Thank you all. 😀😀😀
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Happy belated birthday, Audrey!
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Audrey - Glad you had a spectacular birthday !!
mj1266, downdog, magic light .. thanks for the info i will be seeing a PT on monday for the first time. it helps with my questions.
im still swimming , i figured out that i dont stretch enough the day of chemo [in car, at hosptial], day 2 im asleep [the steroids knock me out with the antinausea], day 3 ,im seized up.but big progress inbetween treatments. my muscle is building up and more and more sensation is coming back to the numb areas..
hugs to all
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Sisters, I have a confession to make. I took tamoxifen for only one day and I've decided to stop. It hasn't caused any huge bothersome side effects, except for a little bit of swelling in my hands, stomach upset, and weird tarry stool (Could these really be from tamoxifen after only one day? I don't know). But I just don't feel comfortable with the idea of taking it. My cancer was stage 1, low grade, clear nodes, and I had BMX. My MO told me that I will be lowering my chances of recurrence from 5% to 3% by taking tamoxifen. For that 2% decrease, I will have to accept 1% increase in my chances of uterine cancer (and a host of other rare but serious problems). I know it's a miracle drug that is saving many lives out there, but I don't think it's worth it in my case. Because I had both of my breasts removed by a very skilled surgeon, the chances of recurrence in my case are probably even smaller than 5% and even if I experienced a recurrence, because I will be seeing my MO for check ups for the rest of my life, my chances of dying from BC is almost nil. At first, my thinking was "I'll give it a try and if I experience side effects I will stop." But the more serious side effects, like uterine cancer, stroke, and cataracts, are not going to emerge until too late. I will always be worried. And I don't want tamoxifen possibly messing with my (already difficult to manage) menstrual cycle and sex life. I'm in my early 40s. I don't want menopausal symptoms and I don't want to go on birth control (condoms hurt). Every time I miss my period, I'm going to have to worry that I'm pregnant and I'm causing birth defects. That's a very long winded way of saying: I just don't want to do it. I feel stupid for taking it for one day and stopping. I don't know what I'm going to tell my BS and MO. But I just don't want to do it. I can allow myself that, right?
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Hi Mary Agatha. I completely understand. You just have to make sure you can live with the consequences should something happen Im much older than you but Im also seriously considering not taking them. Its a very personal decision but I support you!
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I am on my second month of Arimidex and am keeping track of how I feel on it. So far, knee and wrist pain, occasional back pain and a constant upset stomach, some days much worse than others. I feel different, but I am different too, with all I have been through with surgeries, stress etc. I will see my oncologist next months and will discuss side effects.
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MaryAgatha, NCCN's professional guidelines for systemic adjuvant treatment (BINV-6: page 17 of 184) for a stage 1a IDC hormone receptor positive, HER2- (tumour ≤0.5cm, negative nodes; no micromets) is 'consider adjuvant endocrine therapy' (category 2B - not unanimous, based on lower level of evidence). This is their weakest level of recommendation. The levels are: established standard protocol, strongly recommend, recommend and lastly, consider.
Contraindications are one thing, but as long as there is some potential benefit to the patient of a favourable outcome, for the most part, surgeons want to operate, ROs want to radiate and MOs want to administer drug therapies. They may be passionate about what they do, but it's also their livelihood.
In assessing risk and benefits, you need to consider the probability, the magnitude and the duration (one-time vs chronic) of harm vs benefit. What to tell your BS and MO? Tell them what you've written here: that you have assessed the risks and benefits and believe that, for you, the 2% decrease in the projected absolute risk for women with similar dx as you is outweighed by the potential physical, psychological and emotional SEs of taking tamoxifen. Will your MO push you to try it for a few weeks and to see if you even experience any SEs, and then even if you did, you could try drugs to manage them? Perhaps, but if you've made your decision, stand by it. Your body, your choice: you get to make the decision on what tx you're willing to tolerate. Some women want to throw the book at bc, the vast majority of whom have a more advanced Dx than yours. Only you can make the right choice for you.
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Downdog~ As usual the information you provide is brilliant!!! ...and perfect timing for me!
My diagnosis is essentially the same as yours Mary Agatha. I am 68 years young. I started Arimidex in February and for a month and a half everything seemed okay. But then I started having "break-thru" meltdowns every evening. So I called MO and her nurse said stop the AI until after my TE exchange in April. I did that and after successful exchange I felt I needed to revisit the AI question. Called my MO and her nurse suggested I start the A I again and see what happens.
I am reluctant to do so because I am on Zoloft 100mg to help cope with the sudden loss of my 37 year old son one year ago and I certainly do not need anything to exacerbate the struggle with my grief.
It seems that all the AI's have depression as a SE....so I am strongly considering not starting this protocol and instead enjoying my sweet hubby (who wants me to do whatever possible to stave off a recurrence)...and enhance my QOL with lots of snuggles with my 6 grandchildren!!!!!
Thanks again Downdog for all that you have done for us all!!!!
Lots of love and hugs, Valorie (Bunnie)
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Bunnie- no advice here, just wanted to say how sorry I am for your loss. To have this awful business on top of that is something I can't begin to imagine. You don't need something causing depression on top of it all. They are tough questions, these. Serious business. But so very glad your husband is a dear, and that he loves and supports you. And cheers for the grandbabies! Sending you a hug and my best wishes, whatever you decide.
Katy
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Sweet Katy ~ Thank you for your kind words!!! We Sisters are blessed to have you as our Angel Sister!!
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