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Is anyone going flat or living flat?

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  • MamaOz
    MamaOz Member Posts: 239
    edited May 2017

    thanks momine! Heading to appts..

  • Erica
    Erica Member Posts: 237
    edited May 2017

    MamaOz,

    Just wanted to wish you the best of luck with your surgery on Saturday. And I second what Momine and Wildplaces said -- since you're not sure yet how you'll feel after surgery, it makes sense to try living breast-free and see how you like it. If it's not for you, you can always pursue reconstruction later.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    Erica hello

    My surgery went ok

    my post BMX surgery path report was a bit dissspointing and surprised the drs

    In case i didn't mention before I had had silicone implants in for years and planned to have removed , it was the PS that discovered the tumor and got my ball rolling in Dec

    So back to current after finishing chemo drs could no longer feel tumor and nodes appeared a little smaller on MRI but after surgery path report showed tumor still 3 cm and positive apparently had taken refuge infiltrating the implant! And 3 of the 29 nodes removed were still positive. So they all agree radiation a must with arimidex pills for 5 years. But another surprise was a tiny tumor starting in left breast that was as yet undetectable to scans. So i made the right choice I also have opted for no recon .. so as long as I keep these buggers from travelling elsewhere Im ok with it all

    I still have my drains in till monday which will be 16 days im looking forward to that. The little pleasures. Geez I have just looked down at myself so far, the bandages will be removed monday .. so I havent actually seen the full affect yet but for me moving forward is more important than boobs.

    A bit nervous about radiation. Anyone out there have advice

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    MamaOz, so glad everything went ok. I also opted for BMX, although the docs swore lefty was fine. Lefty was not fine, so good riddance. In spite of neo-adjuvant chemo and a lump that shrunk dramatically during, I still had 7 positive nodes on the path. Sucks, but what are you gonna do?

    Radiation is easy, in the sense that it doesn't hurt and it doesn't take very long each time. Still sucks though, and expect to get tired. It is dreary and it does grind you down some. I ended up pretty badly burned towards the end, but I got some of those expensive gel bandages and they worked a charm. My main advice is to make sure you eat well and drag yourself out for at least a slog around the block every day. Moving helps.

    Finally, even if you are good with the BMX and everything, allow yourself to be pissed off, sad, etc., if it crops up. Better to get it out of your system.

  • ingersollnic
    ingersollnic Member Posts: 2
    edited June 2017

    I was 43 (45 now) and every doctor I saw assumed I would want a recon but I decided to leave it and decide later so I could focus on treatment and exercise. Now I am flat and feel do not want recon at all. I am fit and healthy and I wear the smallest possible boobs (AA) and I am able to wear nearly all clothes, and DH boosts me by throwing out constant compliments of elegance around, besides it means people think I look younger now (no droopy boobs to show my age :) ).

    I lived with one boob for a year after treatment which I found very hard, but now having none, I feel so much lighter and fitter and clothes as so much easier for me, I am able to wear those tops I used to admire people in when I had C cups that didn't suit me.

    I won't deny I find it hard, but I am determined a boob obsessed society won't influence my decisions. Good luck with whatever you decide.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    thanks momine

    I notice you are taking femera thats a form of tamoxifen?I have a choice of either tamoxifen or anastrzole( arimidex).

    Also any cream recommentation for radiation ?


  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Hey there, no, femara is an aromatase inhibitor, like arimidex. Tamoxifen works in a different way. I can't see from your DX line if you had IDC or ILC. For the latter, the aromatase inhibitors work better than tamoxifen. Both drugs have downsides and SEs, but it is very individual how you react to either. Some women have hardly any problems and others experience an avalanche of SEs.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    momine

    I believe i am idc

    I have updated my stuff like surgeryon my profile but it doesnt transfer to my signature dx? Do you konw how to do that

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Mama, now it shows up in your signature, so your update worked.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    yeah momine took me awhile lol

    Am I reading yours correctly were 7 of your nodes positive? If so that gives me hope.

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Mama, yes, 7 positive nodes AFTER 3 months of hard-core chemo (FEC). My docs clearly didn't have great faith that I would make it 5 years without a recurrence, but I did. Now we will see if I can make it another 5, and then another 5 and so on.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    momine,do you think ovary removal helped ? I am 63...but my tumor markers are 100% estrogen i also want to start on the hormone suppressor asap as apparently chemo didn't help but may have to wait till radiation is done

    You are a welcome inspiration to me thank you!

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017

    I'm going to pop in to introduce myself. I had a double mastectomy a month ago with no reconstruction. I'm back after being here 7 years ago m at that time I had a lumpectomy. I'm not going to need chemo nor radiation so straight on to Arimidex. I was on tamoxafin for 5 years after trying femera for 2 years.

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Mama, I had the ovaries removed, because I was not yet in menopause when diagnosed. Since I had lobular cancer, my doctor felt it was better for me to go on an AI than on tamoxifen. But AIs can only be used in post-menopause, so we had to put me in menopause first. Besides, my mother had ovarian cancer. In your situation, I don't think there is any reason to do it.

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Hi Kira, sorry to hear about your recurrence. I remember you from round 1. Hope you are doing ok.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017

    momine I'm feeling really good. I had some tears when my breast surgeon and oncologist said I wasn't a candidate for restruction. I'm hoping Arimidex is kind to me. I'm on the name brand because of the fillers. I've never looked at them before and it's no wonder I've had so much trouble I'm allergic to some of the ingredients. Being lobular obviously the tamoxafin didn't work for me.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    momine, my mom had ovarian too

    Oddly my brca came back negative, looking forward to having my drains out to morrow. And nrevous anout my unveiling.. I have looked down bit havent seen full view yet as bandages will come off as well.. but really I made the best choice for me, i have a little 1 year old grandaughter that spending time with her is more important than extra surgeries...bad enough the worry cloud will follow like a bad cartoon.

    And Kira sorry to hear of reoccurrence, i chose bmx not knowing there was another tiny tumor bugger starting in my left side , so I am grateful of my choice , just prayin the radiation and arimidex keeps everything under control

    So thankful to be able to reach out to you all for suppor

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Kira, glad you are feeling ok. May I ask why you are not a candidate for recon?

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017

    Momine I had internal radiation 7 years ago that left excessive damage. My breast surgeon was shocked at how severe it was. I could have had reconstruction to my other breast but decided I'd rather be symmetrical.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited June 2017

    Going flat after 3.5 years of implant life that never really worked out. New implants (also on good side) in Dec./16 due to intense cording and contractures~~rads and original lumpectomy scar close to axilla did my no favours. New implant on right side has not worked out and tightness not good and now lymphedema out of blue for first time.

    I am no longer attached and am excited to get this mess out and move on at last!

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Kira, ugh! I had massive radiation also, not internal (?) though, and it would definitely make recon a challenge. The flat thing is an adjustment, but you will get there.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017

    Momine I'm really amazed how quickly I'm adjusting. And yes it was internal radiation. At the time I had it the treatment was considered safe for lobular breast cancer. That isn't the case now. Unfortunately because of the way lobular cancer grows cancer cells can be missed and a relapse can occur.

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Kira, blech! Sorry you are dealing with this, but glad you are adjusting ok.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    Well My tubes and drains came out today and bandages came off

    I know its too soon and all but not what I had hoped for

    I was hoping the PS would be able to give me decent straight scars ..but they are anything but and I had requested Flat..there are alot of lumps and skin.. I didnt really see it in her office, but looked when I got home I will have to ask.. Im thinking maybe she left extra skin in case I changed my mind for recon down the road ( which if that is the readon I will be angry ) or to allow for shrinkage during radiation ..

    .all in all Im glad its done and I know I will adjust

    its just a shocker ..

  • ravzari
    ravzari Member Posts: 32
    edited June 2017

    Some surgeons, unfortunately, will leave extra skin unless explicitly told, "Do not leave any extra skin" (and even then some will as they assume all women want to reconstruct). :\

    Sometimes it's a case of the surgeon not knowing how to do a mastectomy and not leave extra skin; my general surgeon, who did the mastectomy, said he'd have 'no idea how to do that' and said we'd need to involve a plastic surgeon to give me a decent aesthetic result. I'm glad he was honest in his assessment of his own skills, but I also know not all surgeons are like that and some will just assume they can do it and, once they realize they can't, they 'do their best' and hope the patient will buy whatever excuse they give for the end result.

    Unfortunately, not all plastic surgeons know what they're doing either unless they've done "top surgery" type operations before (which is what trans men have done; it's a mastectomy and excess skin removal to give them a flat, 'more masculine' looking chest).

    It's most likely, however, that yours just assumed you'd change your mind about reconstruction or thought you meant you didn't want to do IMMEDIATE reconstruction but were planning to reconstruct later.

    It's also possible that she left some extra to account for skin shrinkage during radiation, but I'm not super familiar with that; it'd still be worth asking though.

    THAT said, for the first few weeks, my incisions looked 'puckered' and like there was a ton of extra skin when there really wasn't; it was just a combination of the stitches (which came out at the 2 week mark) and swelling that gave it that appearance. It took about 4 months for the swelling to resolve to the point that there were no longer little puckered areas above the incision.

    I do still have what looks like a little 'extra' skin when my arms are down but, when I raise them over my head, the 'extra' skin is taut, so I'm guessing it's not extra at all and is just enough skin left that I could get full ROM without stretching my scars or, earlier in healing, risking pulling the incisions open by having it too tight.

    Revisions, in the US, are required to be covered if they relate to the mastectomy, so you can always request they go in and remove the excess skin if it doesn't flatten out to where you want it in a couple of months.

  • Momine
    Momine Member Posts: 2,845
    edited June 2017

    Mama, it may take time to settle down, but if they did not do a good job, you can ask a PS to clean it up. Mine did even out with time. You had a PS there?

  • bareclaws
    bareclaws Member Posts: 246
    edited June 2017

    MamaOz, I was initially unhappy with the appearance of my chest after surgery but over the last couple of months, the swelling has subsided and things look much flatter and more even, especially at the upper, outside corners, near armpits, which were puffy and ugly at first but have calmed down considerably. There are a couple of fleshy bumps at the inside corners that I'd like to see disappear, though. Give it a few weeks. I'm also an advocate of working all of those upper chest muscles to return to full mobility and strength.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    momine, bearclaws and ravzari

    Thank you all for your reassurance .. and yes PS was the one to close me up and is following up with me so hopefully after some time it will be better but I am ok I have a sport bra on at moment and its fine

    I am currently reading up on radiation in my case

    T2 3 pos nodes. And apparently according to most studies Fall in the grey zone of not sure if its really effective but I most likely will try. Any input?

    My choice of meds tamoxifen or arimidex ??

    After chemo i discovered I have high cholesterol and i know I have osteopenia. I was leaning toward arimidex but now may think tamoxifen may be better gamble

    Any thoughts??

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017

    Mamaox as far as the radiation I'd go for it. The goal is to destroy any cancer cells that might still be around.

    As far as tamoxafin it's true it won't affect bones. It can cause blood clots so if you're at risk for that something to be aware of.

  • MamaOz
    MamaOz Member Posts: 239
    edited June 2017

    I know! Good grief ! I was on another forum checking ot out as tamoxifen can cause uterine cancer as well

    So perhaps i can do arimidex and take a statin for cholestetol and up my vitamin d and calcium..

    who knows why is everything so risky!! Not to mention worrying about lymphadema too !