Post op

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GAMomma
GAMomma Member Posts: 197
edited March 2017 in Surgery - Before, During, and After

so here I am almost 4 weeks post op from a bi 'lateral mastectomy. Im doing okay. I've had a few sets backs here and there,but I am progressing.

Anyway today was my first venture into life by myself. Me,my padded bra and my scars. It was.. weird. I felt vulnerable,naked,exposed,even though I had 2 shirts and a jacket. I guess it's a mental thing.

So upon my check out at the store I bumped into a church member who knew I had surgery. Her mom passed yrs ago from B.C. and she is obviously sensitive to the subject. She asked me a few questions. Did she asked how my arm was feeling due to the lymph node removal. I corrected her and said I only had a sentinel lobe biopsy. She said some were still removed. So now I'm all sorts of confused. I feel like I should know what I had done to me,and I thought I did. Anyway I am confused ,am I at risk for lymphedema? Do I need to take precautions?

Here is a little info on me to help answer my question.

I had a double mastectomy on 1/17/17. I had DCIS grade 3. 3 masses er/pr positive. 1)100/90 - 5.5 cm 2) 100/90 7mm 3) 100/70 6 cm--- if that makes sense. My biopsied post op were all negative. Now I am working on my memory. My paper work is in my binder in my car.

I will have reconstruction but not until I heal.that's a whole different situation.lol

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  • gently
    gently Member Posts: 28
    edited February 2017

    Everyone's story is so different, and medical advances so swift and constant, that people's past experiences don't seem to line up with what we hear now from our own doctors and the women more recently involved in all this. I just talked with my doctor this morning about the sentinel lobe biopsy. It's one node. They remove it to biopsy it. Our body then designates a new sentinel node.

    My doc's response to my question (one of 8 or 10 I emailed her last night) about whether I am at risk for lymphedema and whether I need to prepare with exercise or any other precautions was a simple "no."

    I don't know if the answer is different with mastectomy vs. lumpectomy, but those nodes aren't breast tissue.

    Congratulations on going into the world with your new feel. I hope the setbacks are all behind you.

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  • candles1
    candles1 Member Posts: 77
    edited February 2017

    Ladies, my understanding is quite different. I have been told that the removal of even a single sentinel node can lead to lymphedema, albeit the risk is quite small if only one sentinel node was removed.

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  • GAMomma
    GAMomma Member Posts: 197
    edited February 2017

    candles..this is why I am confused also. What I read says a low,but possibility. I'm more concerned with having blood draws,or blood pressure.. I see my.oncologist next week for a final check up. I will get some clarification then.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited February 2017

    I had two sentinel nodes removed and my BS warned me that although my risk is low, I am still at risk for lymphedema. THerefore, I am careful to protect my right arm from needle sticks and blood pressure cuffs.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    Gently - exactly, those nodes aren't breast tissue. They are the lymph nodes that work to remove "lymph" from our entire body.

    Sorry GAMomma - you are at risk. Yes, the risk is smaller than if you had ALND, but I got mild truncal LE with the removal of only 2 SLN the first time. And the risk is always there. There is a very active Lympnadema group on these threads. Also below is the link to a great information site. It's wise to take precautions. Be aware if you are pricked by a rose or bitten by a mosquito for ever.

    http://www.stepup-speakout.org/

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  • PNWBCHgirl
    PNWBCHgirl Member Posts: 115
    edited February 2017

    GAMomma I too was told by my Surgeon that my Risk is Very Low , phlebotomist and other DR and Nurses said since One was taken in one arm and 2 in the other to be on the cautious side for at least 2 years . just inform all your Dr's and phlebowhen having blood work or shots. I had my flu shot in my thigh.

    However since I had them out of both sides when I had my reconstruction surgery my IV was put in my arm with only one removed. I was fine! However that is not a guarantee someone else would be since we all react to things differently.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    Anything that interrupts or otherwise messes with the lymphatic drainage pathway on your surgical side presents a lifelong risk of lymphedema. So you need to take precautions to minimize the risk and try to prevent it. Since you had a BMX, both arms are at risk. If you can, try to use your thighs or buttocks for needle sticks. Otherwise, doctors advise using the arm which had fewer nodes removed for needles & BP (or even a finger BP monitor if they offer one). Avoid tourniquets if possible, and warn phlebotomists and other personnel who need to draw blood, administer shots, and start I.V.s that you are at risk for LE and they should take scrupulous anti-infection precautions. Avoid getting sunburned or frostbitten, and wear insect repellent outdoors to prevent mosquito or black-fly bites (the latter are likelier to get infected). Avoid hot tubs (or keep your arms out of the water) and saunas. Wear gloves if you need to go into your freezer for more than a minute. Wear gloves for dishwashing & gardening (and long sleeves & pants for the latter). Get your arms measured for compression sleeves & gauntlets, and buy a set for each arm. Wear them on any flight 4 hrs. or longer (put them on an hour pre-takeoff and keep them on for an hour post-landing), when exercising (especially weights) and any repetitive arm movement (scrubbing, raking, shoveling, etc.).

    It would be a good idea to wear a Medical Alert bracelet with a prominent pink emblem (my LE doc told me that emergency personnel don’t think about LE unless they see pink) engraved with your name, “Lymphedema No Ndls BP” (even if you’re only at risk) as well as any other problems (drug allergies, diabetes, pacemaker, etc.) EMS personnel need to know if you require emergency treatment but can’t speak for yourself. Also one emergency contact phone # (preface it with “ICE”). Fill out a wallet card with all that info, and put it into the Health app on your smartphone (include all meds you take). I like the bracelets from Lauren’s Hope (though if you get them from MedicAlert, you get a card with your membership #, their phone #, and all the info you submit to their database can be accessed by emergency personnel).

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  • GAMomma
    GAMomma Member Posts: 197
    edited February 2017

    well Peachy 😑

    I am the type of patient that awful veins too..

    So let me ask. I only had a sentinel lobe biopsy in my right side, my left breast was prophylactic. However pathology revealed BC in my left breast,but I do not know what kind. I have never read the pathology report. So I just need to be aware and precautions in my right or both?


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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited February 2017

    GAMomma, what do your Drs say about the cancer in the prophylactic side. How has this affected your treatment plan? If it was pure DCIS I guess there's no concern about not doing the SNB on that side and it probably wouldn't change treatment.

    If they didn't remove any lymph nodes on one side then there is no risk for lymphodema. I had IDC on one side and DCIS on the other so for the purpose of needle sticks they consider my DCIS my "good" side. Less tissue was removed there, less disruption of the nodes

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2017

    LE (LymphEdema) can develope after ANY surgery anywhere (rather or not lymph nodes are removed) or a traumatic injury. Nodes do not haveto be removed to become damaged resulting in impaired ability to pump/remove lymph fluid from an area. Very simply - they are the 'pumping stations' of the lymphatic system.

    I had 19 positive nodes removed which resulted in LE presenting 9 weeks post UMX (6 weeks into adjuvant Taxol). A friend of mine had non-invasive knee surgery and deals with quite a bit of LE. About 25 yrs ago, I had a very severe lower leg injury ('tissue' and skin damage - not bone) and was told to expect the possibility of LE developing but it never has. Point is there is no way to actually know who (and why) it will or won't develope it.

    It is a VERY good idea to see an LE Therapist (one who does actually have education regarding LE, not just a PT or OT who claims they 'know all about LE'. This allows for them to get baseline measurements and for you to gain education/information about LE before,it,happens (IF it ever does).

    While it is easy for some to just pick up an OTS (Off The Shelf) sleeve and glove/gauntlet, it is not what all experience. The wrong compression level garments can actually cause more harm than good. Not everyone 'fits into' those pre-measured garments correctly. Gloves can be (for some of us) an even bigger issue. I have syndactly (somewhat webbed fingers - toes are worse) so it is impossible for me to wear OTS gloves - so must be Custom gloves. Gauntlets do not work for me.

    IF LE should develop - it is just a bit of 'inconvenience' to deal with - not the end of living life as you want to. Certainly some do have more issues to deal with than some of us do. In the 7 years I've been dealing with LE, I have not changed what I do in the least. I am not 'careful' doing all some say 'has to be done' after an LE DX and have had no issues. I am a very active outdoor woman - have had many cut/scrapes/punctures in my horse 'activities', bicycling, mowing/gardening', fishing, hiking, etc. and so far no issues that caused any of the many 'skin breaks' to become infected. I do not use antibiotic creams - just H2O2 (hydrogen peroxide) immediatly and frequently til healed. 'Skeeters' (mosquitoes) - they are nasty little '*%×&$@* that 'LOVE' me - I HATE them! Every bite I get will start 'infecting' no matter where on my body (have all my life) and have had a few on LE arm which did at a lettle longer to resolve than other areas but did with no need for 'medical intervention'. Same goes for house chores.

    (Totally OT - did you know that it's only the female 'skeeters' that bite humans/animals? Males feed off the back side of leaves.)

    I'm not about to say that what works for me will 'work' for all - IT WON'T! Just as what 'works' for someone else 'works' for ALL of us. We need to gain all the knowledge or experiences we can from all but then go with 'not what's right' for another but find what 'works' for us, individually, to live and love/enjoy our unique life too the utmost - even if some minor inconviences may present.

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  • GAMomma
    GAMomma Member Posts: 197
    edited February 2017

    Lucky my doctor ,well surgeon only,did not say things for treatment would change. I see my oncologist next week. We did not have treatment set up with her just yet while we are awaiting path results. My follow up with her is more concentrated on my blood issue. I massively anemic due to gastric bypass in 2003. I get iron infused a few times a year. She also will let my know about genetic testing results.

    So I'm pretty sure nothing will change for my treatment..no chemo,no roads,no meds.

    So what am so considered? Cancer free,in remission. What type of future will air have with checking for cancer . Or do I even need to be concerned?

    I had DCIS grade 3 er/pr 70/100,90/100,90/100. There were 3 masses within the duct. Or at least I think that what that means. Which is why a lumpectomy was not really an option.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    GMMomma - Hopefully you are NED (no evidence of disease). There is no cure for breast cancer. Again, every one of us is different and all of our docs are different. Some will do a CT scan every 6 months for 5 years. Some will do tumor markers, although they are only an indication and not exact science. Some will do nothing unless you have a problem. (I never have figured out WTH that means). Please do fill in your specs on "my proflle" so we can better answer your questions.

    And please, do listen to everything Chisandy & Kicks have said about LE. You are at risk. How much you choose to be proactive in the future is your decision. Very few docs understand LE since their medical school training about this subject is an average of 15 minutes per a Stanford Univ. review.

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  • lrwells50
    lrwells50 Member Posts: 254
    edited March 2017

    I had three nodes removed during my sentinel node biopsy and I, too, was told there was a low chance for lymphedema.


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