April & May 2015 Surgery Sisters

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

    SuzyQ42, your pets are so cute! Snowmen on the stockings in HI look so out of place to me. It's just what you're used to. Unwrap gifts and head to the beach!

    Jackbirdie, I've added some more info to the last post, so there's some more info for you to discuss with your MO tomorrow. I will continue to edit that post over time, but no more today.

    SummerAngel, since you had developed pecs pre-sx, they will be longer and hence not be stretched to the same degree in order to obtain coverage as required for someone who has weaker and less developed pecs. Consequently, you may not experience the iron-bra/band of pain that many experience, which is caused by over-stretched pecs. At two weeks yours will be angry and swollen. I think it's too early to stretch them, but check with your PS. I did some gentle pec stretching at 3-4 weeks and had my PT release my pecs at 6 wks (earliest PS would ok). The pec release wasn't for pain, but to facilitate dynamic pec exercises. I don't have any suggestions for what could be causing pain around your back. How many ccs are in your TEs now?

    Audrey, nothing like throwing you into the fire the first day back at work. I'm sure your day went fast. You seem to have tolerated your fills really well, which is great (after the fainting issue!). Will you be getting 800+cc implants?

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

    mjh1, here's a simplified version. Hope this helps. Everyone gets 1 CYP2D6 gene from each parent in their DNA. Possible combos are:

    weak, weak: poor metabolizer of tamox

    weak, strong: intermediate metabolizer

    strong, strong: extensive metabolizer

    strong, strong with extra copies on the allele: ultra rapid metabolizer

    strong with extra copies on the allele, strong with extra copies on the allele: ultra rapid metabolizer

    The most desirable combo is strong, strong for optimal metabolization of tamoxifen.

  • SuzyQ42
    SuzyQ42 Member Posts: 32
    edited June 2015

    Jackbirdie, yours are adorable too! I wish mine got along as well as yours do. Here is Sammy the day after my UMX.


    image

    Downdog, Our first Christmas here we went to the beach. Some kids had brought an artificial tree and set it up on the beach. Everyone took turns taking pictures next to the tree. Our Christmas card photo was with "Scuba Santa." I'll have to see if I can find that picture. :D

    We aren't very popular with our friends in the freezing states at Christmas time so I've stopped sending pictures. :D

  • AudreyB
    AudreyB Member Posts: 377
    edited June 2015

    down dog, yesterday my PS said 650cc implants with projection but I'm concerned about that. I have a preop August 4 and will discuss my concerns and desires then. He will not use the new Nstrelle Inspira. He said he will only use them when he gets feedback from other surgeons. He said he would not use an implant until it's on the market for about a year. He had mentioned a moderate plus implant and I know he uses mentor.

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

    Audrey, definitely check in with whippetmom aka the breast implant whisperer on the implant 101 sizing thread (under Recon) for her advice. From what I've read, TEs with their hard backs give you better projection than you'll get with implants. I don't think you'll be happy with 650ccs, if you like how you look with 750cc TEs. Most PSs size you up with the final implant volume. You don't want to be disappointed in your result. Rob will still be Roger Rabbit, except you don't want him thinking 'where the hell did they disappear to?!'

  • mjh1
    mjh1 Member Posts: 445
    edited June 2015

    Here's my boy Nemo!!

    image


  • SuzyQ42
    SuzyQ42 Member Posts: 32
    edited June 2015

    He's adorable!!!! I want to smooch his little face.

  • mdoc524
    mdoc524 Member Posts: 336
    edited June 2015

    Hi all - loved seeing all the pet pics - they bring so many smiles so I will join the club in sharing a pic if my baby girl Quinny - she is a pitbull mix we rescued 4 years ago & just such a sweetie...

    Also question on exercise - my PS said no extra movements for me yet - 3 weeks post-op! I did want to try & start yoga & walking! I cannot do much more as I almost broke my neck 5 years ago so cannot do any intense exercise - how soon were you all able to start exercise? And did you ask for PT - that was not discussed & would love that???

    image

  • SuzyQ42
    SuzyQ42 Member Posts: 32
    edited June 2015

    Quinny is a love!! I love her inquisitive expression.

    As far as exercise, my doc said I could start walking right away. The day after my discharge I walked down to the corner store and back. I've been walking pretty regularly since. I went back to work 2 weeks post UMX. I'm not able to do anything that requires repetitive arm movement because of the lymph nodes taken, but I'm pretty much back to my regular routine except I get tired very easily.

    Maybe you should ask your doc exactly what is OK and what isn't. It seems like walking would be good for you. And maybe swimming (other than the arm motion - I can manage a weak crawl or a doggie paddle) too.

  • mjh1
    mjh1 Member Posts: 445
    edited June 2015

    mdoc - Quinny's face should be on a poster.  Love those ears!!! Too cute!!  You definitely should be up and walking.  I would hold off on doing any other exercise until at least 4 weeks.  While your skin on the outside may be healed, the inside is still healing.  I would check with your PS though because each one is different.

  • mdoc524
    mdoc524 Member Posts: 336
    edited June 2015

    thanks guys - I think PS was concerned still of potential fluid output & the more you move the more fluid he said so just wanted me to stay put for few more days is how he put it! Definitely will be walking more - have done some small trips with hubby to store just to get out for a few minutes - I was told no swimming at all even when I go on vacation in July - no big deal - as we are installing a pool - figures!

    Next week I will be almost at 4 weeks post op so I am hoping will be able to do more per dr

    Have a great night

    Mary

  • SuzyQ42
    SuzyQ42 Member Posts: 32
    edited June 2015

    Oh, Mary, I didn't realize you were only 4 weeks post MX. I am almost exactly a month ahead of you as far as surgery date and I only had the left breast taken.

    Bummer about the pool and your vacation, but you'll be swimming before you know it. Take good care of you.

  • lovevt
    lovevt Member Posts: 46
    edited June 2015

    I loved seeing all your pet pictures.  I wanted to share mine too! The first one is Kelsey she past away in November at 141/2yrs old.  I miss her but she had a wonderful long life!!  Then that is Stratton our handsome cat who also really misses Kelsey, he hasn't been the same without her and its been 7 months.  And the last little one is our new puppy...she is only 4 weeks old! We do not have her yet...she will be coming home some time in August.  I wasn't ready for another dog but with all that has gone on with BC I realized I could use another little furry friend. Hope the pictures make you smile like all of yours did for me!

    image

    image

    image


  • lovevt
    lovevt Member Posts: 46
    edited June 2015

    Downdog

    I have a question I think you might be able to help me with.  My ROM of my arms I feel is probably about 90% if not more but on full reach up and trying to keep my scapulas down I have sharp pain under my arm it feels like a band and it inserts into back of the humerus.  I am not sure if it is Teres major muscle or lat insertion or scar tissue.  I have it bilaterally but definitely more on right- my dominant side. It is such a different pain- sharp burning pain and so tender to light touch as well.  Any ideas? I have been doing some very good stretches which are painful but ok and some massage even though painful. Thank you for any insight you might have.

  • dtad
    dtad Member Posts: 2,323
    edited June 2015

    Hi everyone. Im post op BMX with direct to implants 4 weeks tomorrow. Im 62 and do have a chronic pain disorder before BC dx. However. Im really frustrated that my recovery is so slow. I still have a substantial amount of pain and tire so easily. Any words of encouragement?

  • lovevt
    lovevt Member Posts: 46
    edited June 2015

    dtad

    I am 8wks post op BMX w PAP flap reconstruction.  I think you just need to be patient with yourself.  I had a lot of trouble with that also.  I thought by 4  weeks post op I would be able to go back to work...and I had to take 2 more weeks off.  I felt those last 2 weeks were the toughest because I didn't see a lot of improvement day to day.  Try not to let it get you down just give yourself a little more time.  Yesterday I felt the best I had since the surgery.  That was big! Today not as good but I still had a good day yesterday.

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2015
  • downdog
    downdog Member Posts: 1,432
    edited June 2015

    Love the pet pics! Nemo is a doll. Is he a chihuahua? He looks like he weighs about 5 lbs! No restrictions picking him up post-surgery. Quinny looks so serious and trustworthy. Yes, Mr President, I've got that under control. I don't know how common pit bulls are elsewhere, but I never see them. It is illegal to breed or get a pit bull pup in Ontario. The legislation was passed a few years ago after a few kids were mauled, which is too bad, as there's no such thing as a bad dog, only bad owners. No doubt the offending dogs owners were responsible for training them to attack. Kelsey looks tuckered out. Goldens are great with people. Every one that I've encountered when I'm sitting comes and puts its head in my lap. Did she do that? What kind of pup is she? I like her eyebrows.

    lovevt, my guess is TM. Do you have any edema? Since it's bilateral I would rule out traction nerve injury during surgery. If you hold your arms laterally and bend 90° at the elbow, turn inward and downward with resistance do you trigger the armpit pain? Can you see a PT who can examine you? BTW, I so, so miss my chiropractor. My PS has put the kibosh on chiro for 12 wks. I usually get adjusted weekly for wellness, and can't wait to see him at the end of July.

    dtad, I think the chronic pain disorder makes it tougher for you psychologically. How many ccs are your implants? Where's the pain? A band of chest tightness, armpit pain on left side? If you are able to tolerate walking, try and walk a little further each day. Walk outside on a nice day in a scenic area, breathe deeply and appreciate the beauty of the area. Exercise will build stamina, energize you and help healing. Focus, commit and you can power through this! Do stretching to your tolerance level. See a PT, if that is an option for you. Make some small achievable goals for yourself on anything important to you or an area of interest and focus on what you need to do to be successful at it. Challenge yourself and learn something new. Do things that distract you from your pain and that you enjoy. This idea's a reach and requires serious consideration before undertaking because of the ongoing commitment: get a puppy or kitty. They will bring you joy if you're up to the responsibility.

    Jackbirdie, let us know what your MO has to say re CYP2D6 testing. I was aware of it previously, but you've now intrigued me on the topic, so I will research more and write an intro paragraph for everyone that's easy to understand.

  • mjh1
    mjh1 Member Posts: 445
    edited June 2015

    lovevt - sorry to hear about Kelsey.  I know how difficult it is to lose a beloved pet, but you now have that adorable pup that will hopefully brings lots of laughter for you.

    downdog - yes, Nemo is a chihuahuh.  He actually weighs 9 lbs and after leaving him with grandma when I go on vacation he weighs 10 lbs....lol.  Very spoiled!!!  He was actually the first thing I asked the PS about when I was going in for the MX.

  • lovevt
    lovevt Member Posts: 46
    edited June 2015

    downdog Yes I too think it is the TM.  I have been working on it myself and I think it is a little better.  It does not feel like nerve pain, but I was thinking it could have been from the positioning in surgery. I have been adjusted but not fully because I can't lay on my stomach obviously and with the incisions in my legs I cannot bend my legs fully. But I have a colleague who at least adjusted my neck and it was wonderful! 

    The puppy is a mix of Havanese and Cavalier King Charles Spaniel, some call it a Cavanese.  It was not a planned litter...which I love...a home breeding.  I think right now she looks more Cavalier with the brown eyebrows!

    mjh1 Yes it was really tough losing Kelsey and I really wasn't going to get another puppy. When I lost my first cat I swore I would never get another- it just broke my heart. Until there was a little kitten 7 weeks old alone outside my doorstep meowing(no joke).  I felt like I was given him on purpose.  I feel this puppy is the same.  I never hear of home litters anymore.  Plus she is going to be probably 15-20 lbs compared to Kelsey at 75lbs.  Totally different experience. It has given me something to look forward to through all this!

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

    Downdog- my MO, who I like very much, especially since we are in a rural area, and there is only one other MO, said he has never ordered the test, doesn't even know where he could order in, and as it us not standard of care or Medicare approved, insurance wouldn't pay. And I'm on disability, so something tells me I wouldn't be paying either.

    He tried to reassure me in general, and resisted the idea is sidestepping the whole issue of just going OT OS + AI, on the basis that if you drill down in the SOFT trial data, it hugely benefitted younger women over older ones. I can hardly complain. A young woman with bc has so much unfairness to start with. So Bravo finally a win for their team

    He also said in the absence of trial data, giving Tamox first then switching to an AI in a couple of years when surely I'll finally be in real menopause, is his preference.

    So.

    I do chemo 6. Blech.

    I don't skip the last Neulasta (the pneumonia made an impression on him)

    I start Tamoxifen about 3 weeks PFC, assuming counts are coming back up.

    It was all a good exercise in strategic thinking, but feel a bit defeated.

    I would not probably change MOs even if I could. I think he's a good doc.

    The most valuable thing he told me, which I was already starting to appreciate onmy own, is, it's like Vegas. It's a crapshoot. He said it kindly, not sarcastically, saying all of the data ultimately gets filtered through humans, and therein lies error and the lack of guarantees. He said the best way to use thus kind of energy is to learn how to truly enjoy life and go live it, knowing that for now, I've done everything I reasonably can.

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

    Wow, Jackbirdie, that kind of takes the wind out of my sails on the CYP2D6 testing. Trust is imperative with your MO and you need to be on board with him. You never know, at 58 chemo may have nudged you into menopause. If you start tamox 3 weeks PFC, I guess he isn't testing FSH and estradiol beforehand. Don't feel defeated. You inquired about the CYP2D6 and it wasn't viable. It's not like there's lots of data conclusively validating the use of the test. The jury's out. Time to move on with the plan.

    Don't be concerned about 'only' 85%. You are totally loaded with clobber power. The 2010 guidelines by ASCO-CAP (American Society of Clinical Oncology/College of American Pathologists) have mandated that breast cancer specimens with ≥1% positively staining cells by immunohistochemistry should be considered ER positive. Low expressing tumours are considered 1-10%. MOs are supposed to discuss the pros/cons of hormonal therapy with women in this low expressing category to determine whether or not it's to be part of their tx. I have read it in the past and can't find the source now, but there are five categories of responsiveness and I am going on recall here and believe that the top category was 69-100%, so you are smack dab in the top expressing category. Get the chemo out of the way, get over the chemo SEs and then work on mentally compartmentalizing this so you can heed his advice and truly enjoy life. You'll have done everything you could do to fight this. You can't change the past. Make an informed decision and don't look back. No regrets. You've got this.

    http://www.cap.org/apps/docs/laboratory_accreditation/summary_of_recommendations.pdf

  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2015


    Positive or not, I still worry about my 25%!

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

    Downdog- tears are rolling down my face. In mostly a good way. Thank you for what you said. It was very nice of you to do all that research, and then to make me feel better when it all fell apart. I will lift my head up and move on, as soon as I finish this little pity party.

    And I apologize deeply to you, Pat, and anyone else I may have offended by complaining about being "only" 85%. We all have different stories here, different dx's, different "prognoses", but somehow we always manage to support each other through this awful mess. None of us asked for any of it, and the bad news certainly isn't handed out equitably. As my Mo said, it's a crap shoot. I wonder how much any of the "numbers" help any of us except to distract us into a false sense of security. Obviously, I'm not fit for company at the moment. As I write, I feel myself sliding down the rabbit hole. I'll come back when I am.fit for company.

  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2015


    No offense at all Katy. I was actually trying to be witty ;0).  Just saying even if 1% is pos, I still worry about putting all my hope in the hormonal basket. You have nothing to apologize for. I think my comment just came out wrong.

  • mjh1
    mjh1 Member Posts: 445
    edited June 2015

    jackiebird - this is exactly where you need to be when you feel like you're slipping down that rabbit hole.  Although our journeys may be different and some more difficult than others, the one thing that unites us is BC.  We are all warriors in our own right and know what it's like when we need a kind word to lift our spirits or to nudge us along to keep going or need a hand in climbing out of the rabbit hole.  You can and will do this.  There will be many sisters after us that will need you for your wisdom and support.

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

    sniff. Blubbering again!

    Do you think Downdog will take my wings away! Human all along.

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

    Not a chance! You earned them. I have no doubt you'll continue to provide angel support to sisters in need of an emotional pick-me-up on this thread and others for the foreseeable future. Hugs for all you do

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

    Great pet photos! I love animals and it's nice to see everyone's pets.

    The pain in my left side going towards the back turned out to be nerve pain. The PS said it's quite common and icing it helps. It's improved a bunch in the last couple of days, thankfully. Now, however, I'm running a consistent low-grade fever. It was 100.9 at the doctor's office yesterday, 100.2 this morning. My oncologist's nurse said it could be from the Tamoxifen, but to keep taking it and just let them know if it goes any higher. I have no symptoms of infection but it still worries me. Recovery seems to be quite the roller coaster! I'm still planning (for now) on returning to work part-time next week. I'm hoping the fever breaks soon.

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