Lumpectomy Lounge....let's talk!

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  • 1step
    1step Member Posts: 110
    edited January 2016

    Wow, lots happens here in an afternoon. Haven't been able to log on since lunch, so here goes:

    Sloan, LTF, and Peggy, what is this book that you brought up in regards to you going back to BJJ, Sloan?

    614: Remember, they call it the practice of yoga and it is about your journey. Don't get discouraged that you don't look like the teacher.

    Hawaiianmom: welcome. I'm new around here too, but this is such a welcoming group.

    HH: Ugh, I dread the idea of my procedure being pushed back. I'm a breakfast eater, and I hate the idea of fasting, and can't imagine how horrible I will be to be around if it gets pushed later than it already is. I'm sorry to hear that your long, stressful day was even longer.

    Peggy: Granted, I've only been active a couple of days here, but you are so much a part of this group, I bet you might even get missed faster than some people who be at work. :-)

    April: I agree wholeheartedly about the awesomeness in this group. (I'm an April, too, BTW).


    ALL: I would love to be able to join you on Fitbit, although I don't imagine that I would be putting in many steps this weekend. I'm 1step there, as well, with the same profile pic.

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited January 2016

    1Step, how nice of you! Once you're here, you're one of us! For how long doesn't matter. We're just glad you found us and hope we can help you.

    HUGS!

  • ayr1016
    ayr1016 Member Posts: 228
    edited January 2016

    Question for all of you. Did you get genetic testing/results prior to getting your lx?

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Peggy - I hope you can get your test soon and it turns out to be nothing serious! ((hugs))

  • 1step
    1step Member Posts: 110
    edited January 2016

    Ayr: Yes, in fact, my BS didn't want to schedule until I had the results. I know that we probably would have considered other options for surgery if genetics were positive.


  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Blamoms - Great you got results! I too am Stage 2 grade 3. Im post chemo 4.5weeks now. I never had morning sickness and was very ill through chemo. Never heard that theory LOL. No way of knowing, just take it as it comes, my first 4 rounds 3 weeks apart I was in hospital for 3 days on a drip, took total of 8 days to recover, but then good for just under 2 weeks so could work. However I got worse as it went, Taxol I was in alot of pain for 8 weeks so had to stop working altogether :( I never planned sadly for this, but I did what I had to do as per what my body dictated. HEAPS of ladies blitz through Chemo!!! You have a great attitude, so day at a time. Im on the August 2015 Chemo thread.

  • Italychick
    Italychick Member Posts: 2,343
    edited January 2016

    just a short comment about nausea, try to keep a little bit of something in your stomach all the time, yogurt, whatever you can handle.

    Peggy, best of luck with stress test, I will be in your pocket!

  • april25
    april25 Member Posts: 772
    edited January 2016

    Genetics test -- Yes, I got mine before LX, BUT-- I had chemo first, before surgery, so that was 5 months of chemo and a month before that treatment started, and a few weeks between chemo and surgery... So there was plenty of time to get tests and result back. (Didn't get any alarming results from the test, but the doctor kept warning that there were only a limited number of things they were testing for these days and down the road there could be more tests...)

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    Blamoms, yay on the negative nodes, sorry about needing chemo--but triple-neg's recurrence rate goes down after 5 years, while we ER+ gals are never fully out of the woods, hoping natural causes get us well into old age, before the cancer cells lose their appetite for estrogen.

    I got surgery first, but didn't schedule my rads until my genetic panel came back negative. Had I been positive, I'd have cancelled rads and gone for bmx with immediate autologous reconstruction (could stand to lose that belly).

    MLP3, great news on the nodes!

    Exhausted--had an early LE therapy session (because my symptoms disappeared overnight, the PT is still not saying I have true LE--but some of the wrist tightness and sore spots/knots are back). Just got back a couple of hrs. ago from a marathon Springsteen concert (3.5 hrs, no intermission) and was ravenous--standing, singing along and bopping almost the whole time. Burned up all the carbs from the chunk of roll I ate from an Italian beef sandwich (plenty of beef, but I hadn't had lunch). Made some hash with an egg on top for a midnight supper. Hoping the scale doesn't reflect it. I felt like I had as much of a workout as when I used to play 3 sets with my old rock band--only tonight I didn't have to tear down or load the van


  • AMaree08
    AMaree08 Member Posts: 45
    edited January 2016

    Hi ladies,

    Sorry I haven't been on her much been trying to get back into work, gym and normality. Can I just say how amazing this network is, you are all incredibly inspirational and so so supportive! 

    Feeling a bit crap today.. My last update was that I had been told I have to wait to BRCA test done to establish my treatment plan. Since then we have learnt that to get the test done and results takes up to 6 months. So based on my initial post op meeting, treatment would start close to a year after my surgery which doesn't make sense, especially when they are saying your young and we want to be aggressive. Well the training doctor who handled that meeting got it wrong. 

    So we asked some questions and made some noise. I have today been told over the phone, by the breast care nurse that my tumor was lifted from grade 2 to grade 3, I am HER2 + and I have 4 months of chemo coming up once I establish what I want to do with my eggs with the fertility clinic, then radiation treatment. 

    We all thought I was just having some radiation treatment so to be told this over the phone today very unexpectedly has been bit of a shock to the system. Hoping to get a copy of my pathologist report, get in front of my surgeon who I trust and get some answers. 

    Feeling a bit gutted about the way it's been handled but that aside its time to look forward and get in front of people who know what they are doing :)

    Hope you are all well, thank you for all your support and advice for me so far xx

  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    Biasmom I also am triple neg and had a lumpectomy and reexcision. Chemo is tough but doeable. I did AC-T chemo I finished 6 weeks ago today and am now doing rads. I know it is incredibly scary hearing triple neg and our prognosis, but like others said our cancer respondsvery well to chemo and the reoccurrence goes down after 5 years. The triple neg board here is great just like this one. I will say to ask your mo about genetic testing to help you decide any further surgery of a bmx. A lot of triple negs do get lumpectomy, so either surgery is ok. I was neg for my genetic tests. If you have any questions or need support just pm me.

    Peggy good luck with your tests!

  • HawaiiMom
    HawaiiMom Member Posts: 113
    edited January 2016

    aloha again! You are all amazing! I had to search two pages for my original post!

    Yes, I had two surgeries because my margins were less than 1mm after the first surgery. The second surgery they found atypia in the margin. I had two foci of invasive lobular carcinoma, one of which was 6cm, which was my ticket to six lovely rounds of chemo. I am in the midst of the chemo now, my worst side effect is hives. I was taking steroids to control the hives and my MO wants to stop the chemo since he doesn't want me to continue steroids. I just want to do as much as possible to eradicate any stray cancer--inwant to go the course.

    My first instinct was mastectomy after my BS wanted to go back in, but i chickened out. Lol. But now that I mull it over, with the two foci, atypia, the difficulty in detecting the lesions in the first place...perhaps I should just have the mastectomy anyway. I asked my BS what she would have done given my circumstances and she said "mastectomy". Too bad at the time I was signing permission forms for the lumpectomy!

    So...skip two months later...i will be able to make the decision to go with a mastectomy after my next mammo in two weeks. It will be an irreversible decision...haha. let me know what you think. My pendulum right now says don't do anything more until you have to. I dread that the other shoe will drop in a few weeks.

    Hugs to you all!!

  • Jclc83
    Jclc83 Member Posts: 246
    edited January 2016

    Gee Peggy, I had no idea you weren't feeling well. Make sure they do a chest X-ray. Perhaps you have walking pneumonia or something. I live alone too and often think If something happened to me it might be a week before someone ( my kids) find me. I think about my pets and the mess. So I know what you mean.

    My BS ordered genetic testing for me before surgery. They rushed the BRCA and the Ashkenazi Jewish panels which took two weeks. The other panels came back after I had surgery. Funny thing was that my insurance refused to pay for genetics testing after it was done.. Ugh

    Saw my BS yesterday, he's such a sweetheart. I would use him again in a heartbeat. I hope I never have to. I have to go back on my surgical anniversary.

    Welcome to all the newbies.

  • brithael
    brithael Member Posts: 224
    edited January 2016

    Blamoms - Yea for no nodes!

    ChiSandy - Glad you enjoyed The Boss

    Had "Skele-gro" shot yesterday. Dr. dialed it down because of bone pain with the neupogen. So far, so good on bone pain.

    Trying to stay on top of SE's experienced during last chemo session. Hot flashes last night, but off "Dex" as of today. I took off my nightcap this morning, and it was full of little tiny hairs. My hairdresser did not shave my head, but buzzed it down to about 1/4". I'm hoping that keeps any of the little bumps from forming. A lot of it will probably wash off this morning in the shower. I still have hair on my arms. Could stand to do without that.

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited January 2016

    Have my exercises stress echo test scheduled for Monday afternoon. No coffee that day :( I haven't felt bad but I have had discomfort towards my collar bone that is eased when I hold up my left (bad) breast. I had a cyst removed from that breast nearly 50 years ago as well as my Lx. I think that something was disrupted in the muscles or balance of the breast since this is not a new thing. But what is annoying at 50 becomes a tad scarier at 70. As we all know, when you have BC you realize you are not immortal and that's hard to confront. Intellectually we know that but our gut apparently has a different outlook. Also playing into that is that I still think I'm 50 :)

    I mentioned to my sons that I have been stupid about heavy lifting, thinking I can easily toss around 25-30 lbs of stuff and find that my body says let's not do that again. They both said that they have run into that, too, and they are in their 40s. Made me feel less stupid.

    JcLc, I'm not sick so I doubt I have pneumonia. Of course anything is possible. I do have rotten allergies and will start a new drug for them today (Azelastine). Anyone used that? All the new ritzy allergy meds do nothing for me. Benadryl helps the most. Guess I'm an old-fashioned gal!

    Hoping that all awaiting path reports have good ones. Things are moving so fast here I'm sure I've missed someone who needs hugs so I'll just send them to all of you!

    HUGS!

  • Molly50
    Molly50 Member Posts: 3,773
    edited January 2016

    Amaree, I am sorry for the shock of the phone call but it's good that finally things are moving forward for your treatment. Since grade 3 and HER2 positive can mean aggressive getting started on chemo is important. The good news is Herceptin and perjeta are miracle drugs. HER2 isn't the automatic bad news anymore because of the targeted therapy. Sending hugs, positive vibes and prayers your way.

  • Molly50
    Molly50 Member Posts: 3,773
    edited January 2016

    Genetic test was done on me after my lx but before my mx. Unfortunately the results were misfiled and I saw the results online the morning of my umx. Too late to change the surgery to BMX at that point. I am getting every 6 months monitoring between mammogram and MRI until I have the right side removed.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Blamoms...glad you have your results....like LTFly said- chemo is a badass cancer killer...and, you are adding a second eviction notice to BC!

  • MLP3
    MLP3 Member Posts: 534
    edited January 2016

    I had my genetic testing done prior to lx but within a timeframe to have the results back. A bit close and I gambled, but it paid off!

    Peggy- we would most certainly miss you! Feel better😘 Maybe the cold and dry air is affecting you...?

    Chi sandy- you know how to live girl! Champagne dinners, Springsteen and late night bites😉

    LTF- you're adorable! The short hair is really great on you... Maybe you'll keep it when it starts to come in again.

    Amaree/ hang in there! At least you're getting things going and treatment underway.

    Blamoms- yay for no nodes!!!

    Getting ready to get my hair done for my night in Boston. I'm actually exhausted so dh might be getting a good nights sleep if anything

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Peggy- glad you are having all of this checked out. And, as independent as you are- can only imagine how hard it is to not just do things that need to be done- when they need (or you want them) to be done. Take care of YOU though. Also, do you have an alarm or monitoring system? My mom has a little necklace she wears when she's at home that she can use to indicate she needs help to her monitoring group. Might give you and your sons peace of mind until you move?

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited January 2016

    HappyHammer, no alarm or monitoring system. I may wind up getting something but I think I'll wait. I don't mind living alone and I'm not scared at all. Just that one concern. I do make sure that no matter what I'm doing, my phone is with me. I have been pretty good about it but now I'm trying to be perfect. Which service does your mom use?

    HUGS!

  • mairew
    mairew Member Posts: 84
    edited January 2016

    Peggy, we need you so you better look after yourself!

    My genetics were not back before surgery but I went ahead anyway because I was pretty sure it wouldn't show anything (which it didn't).

    My Oncotype score is at my doctors office as of this morning. (I called Genomics to make sure the test was requested and processed) I am starting to officially freak out.

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited January 2016

    Mairew, it is really hard to wait for that Oncotype score. No matter what the score is, at least you will know what your best course of treatment should be. I find that easier than being up in the air. Hope your MO or whomever is keeper of the scores calls you today!!

    I am being good. I just need to be smart (and that's quite hard)

    HUGS!

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Peggy...her service is through our local phone company. It gives us all peace of mind that if she had an issue she cold get help.

  • Peachy2
    Peachy2 Member Posts: 350
    edited January 2016

    Blamoms, great about no nodes! My sister in law is triple negative, diagnosed in '11. She has always says she's glad she didn't google Triple Negative when she was first diagnosed. Please don't! For what it's worth, I had morning sickness, but had almost no problem with nausea with chemo. There's a product called Queasy Drops that are hard candies with ginger, which I kept in my purse. I got them at the hospital gift shop, but they are also available in the baby section at Babies R. Us.

    Peggy, take care of yourself! We would certainly notice if you weren't here. :)

  • KarenR0618
    KarenR0618 Member Posts: 78
    edited January 2016

    I am new here. I went for my mammogram in October. I got a letter that I needed to come back for another one. I went back in November. I was told then that they saw something they wanted to check out so in December I had a needle biopsy. That came back stage 0 and the radiologist told me I needed to see a breast surgeon. So I visited the surgeon and I have been scheduled for lumpectomy on February 1st. The hospital called and my pre-op is set up for Monday. I was told that I would need radiation after this. I am getting a little nervous. I have been telling everyone it is going to be so easy. No big deal. I am so glad I came here. I am grateful for being able to look on here and get some ideas about what will be happening.

  • Peachy2
    Peachy2 Member Posts: 350
    edited January 2016

    KarenR0618, glad you found this group! You can keep on telling people that it will be easy, because it will be. Anyone who has not been through surgery and radiation has a view of it being much more difficult than it is. My mom was asking "How many days do you think you'll be in the hospital after surgery?" Um, I'll be home for dinner that night. And "Why don't I fly up to help you!" Well, the surgery really doesn't leave you incapacitated, just a little sore and tired. Being nervous is normal, particularly if you've not had surgery before (I hadn't) but you will probably find yourself looking back at this and saying to yourself "That really wasn't so awful!"

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Peggy, just got an answer from my MO's office - she passed my question back to me through the nurse. Said I should ask the BS or the RO. Gee whiz. Why do I need her?

    Did you actually sell your house yet?

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited January 2016

    MLP3--great news about the genetic testing!~ Let's hope the rest of it also comes back normal.

    Blahmom--I had terrible morning sickness for 6 months with all three of my children, but I didn't have much nausea, and NO vomiting, with my chemo. So, there is hope. They gave me a ton of meds with the chemo to keep me from being sick, plus Zofran to use at home. I think I took a total of 6 pills during the whole 4 months I was on chemo. I have about 22 pills left.

    I am fortunate to be able to work from home, so I have not had to go to the office much these last 4 months. I am a community health nurse, so I go on home visits. My MO restricted me to healthy clients only, and NO hospital visits! I think I may have used about 6 sick days, total, since I started chemo in Oct. Fortunately, I have a very understanding boss and I work at a job which doesn't require me to be on-site. I used to be a school nurse and I definitely would have had to take leave from that job--all those little germ vectors. Yikes!

  • 1step
    1step Member Posts: 110
    edited January 2016

    Peggy: I love my Azelastine nasal spray. Of course, I started it following sinus surgery in August, but I feel so much relief and I notice if I forest a dose. I had been doing a 24 hour medication, so I had to get used to remembering it in the evening.

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