Lumpectomy Lounge....let's talk!

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

    Gemma, I'm moving to Spokane Washington in June (I hope). I attended Interlochen 2 summers for 2 week band courses. I loved it. Hoping your daughter gets in. If you're this way before June, let me know. I'm right off I-75 in Pontiac, so convenient! Maybe you could make one of our SE Michigan (which includes the whole country BTW) get togethers at the vineyard in Jackson! Not during winter I suspect. I have cousins littered all over the Chicago area, especially Homewood.

    HUGS!

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Bright socks - fantastic news on the clean margins and no node involvement. Good luck with the rest of discovery. I hope you can get a plan in place that your comfortable with!

    Amy

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Gemma - What a wonderful story and friendship!!!! Beautiful!!! yes I believe God puts people in our lives at the right time..for different reasons. Ive had some wonderful friendships like that too, then suddenly it was gone...you just have to cherish what you have when you have it. Sydney is very expensive and faster pace than Melbourne.

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Poodles & Peggy - too funny about the saint. My daughter needs to pick a saint for her confirmation in March. I'll pass his name along. I was thinking about her confirmation today. If I end up having chemo, I'll be in the thick of it at her confirmation. She's been really reticent about my dx and I think she's afraid (or even embarrassed) about I'll what I'd look like without hair. She has amazing hair. I'll post a pic. I can't believe she's going to HS next year, but at the same time I'm so proud of her. She really has her crap together!

    image

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Brightsocks - Hope you're ok...sounds like you'll need both radiation and hormone pill. Id just go open minded to your Oncologist and hear what they have to say then step at a time.

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Peggy - I'd love to meet up. Wherever, whenever!

    My niece lives outside Seattle. She loves it. She grew up in Southern Florida so it's very different from what she's used to, but she went to Notre Dame and lived in Chicago before moving west. I like Chicago, but really miss the ocean!


  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Gemma - Wow!!! She's so angelic!!!!??? what a beautiful energy! It is hard on kids. My first time round 4yrs ago my Son was 12 and daughter 14 and I had my sons confirmation but was only doing rads. My daughter had her confirmation only after my mum passed a few months later...the beautiful thing was her final conversation she had with my Mum she sai Nanna...Im taking the name Joan after you...my Mum was proud with tears!!! she passed suddenly. After this dx and oncologist visit in July, I picked up my son and when he asked how I went I burst into tears!!! Chemo!!! he said!!! so you'll lose your hair?? I thought...he was embarrassed about that!!!!! NOOOO he said Im proud to walk down the street bald if you want!!! Id sooner have you bald than lose you Mum!!!

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

    Ha! How 'bout that, Peggy? I'm right off I-75 in Georgia. It's only about a 12-hour drive from my house to yours.

    Loopy

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    bright socks-glad you got some good news. Hope the rest is too!


    Gemma-your daughter is gorgeous! My daughter is in grade 7. Her bat mitzvah was one week before my surgery...before I had my plan I was worried I'd be in chemo, but there are great wigs out there! It'll work out somehow!

  • Brightsocks
    Brightsocks Member Posts: 159
    edited January 2016

    Peggy- It is not so bad I will have a better guess on what will happen next. The surgeon was very happy with the results but she can't say what will happen next. I wish there was a clinic that was more like a one stop shop. I will just get a phone call at some point and get an appointment. I will just keep on reading and learning more so I can have a better understand. Is there anyone on this group that has had Tubal?

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

    Gemma, your daughter is beautiful. Try not to worry too much about chemo. I was rather pleasantly surprised that it wasn't as bad as I thought it would be. Oh, sure, I was really fatigued and I still have diarrhea. I lost most of my hair (but hey! I haven't needed to shave my legs since Oct!) I ran some fevers and had to go to the ER a couple times. But I never once threw up and really didn't feel nauseous. My taste changed after each treatment for about 10 days, but after that it went back to normal. I didn't gain any weight, despite the steroids. I have only missed about 6 days of work in the last 4 months.

    Hopefully, you won't need chemo at all, but if you do I hope it goes as well as mine has gone.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Mustlovepoodles - Awwwww wish I had your Chemo experience!!! Its not all bad...Ive loved!! the hairloss everywhere else haha

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

    Sorry Peg, 7 weeks of rads will take me through St. Patty's day. Which is worse?

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

    Gemma, your daughter is gorgeous! Spokane is far from the ocean - the eastern edge of Washington.

    Maybe we should have an I-75 get together!

    HUGS!

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

    Peggy: the Azelastine I'm taking is twice a day. I would love once a day, but ah well.

    I finally heard from the pre-op nurse about 4 this afternoon after calling them twice and my BS's office calling twice. All along, I've been told this would be an outpatient, but the pre-op nurse said there was a possibility that I would be admitted. Really, you tell me 18 hours before I have to be there that I might have to stay!?! I'm glad my dh is so good at rolling with punches, because he's helping to keep me sane. Ready for this to happen, and be home again.

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Happy Hammer - I was scrolling through today's post and just saw your one about your glasses. LOL, thank you! I needed that laugh! :)


  • Marisarose
    Marisarose Member Posts: 1
    edited January 2016

    Hi. I'm supposed to get a lumpectomy plus radiation. What is the itching caused by? Trying to decide if I should just get masectomy.

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

    Marijen, I can see that you're playing that finger violin :) Rads aren't bad - at least they weren't for me.

    1Step, I think I didn't use the spray properly. I'm terrible with nasal sprays and really don't like them. But if it works, I'll do it. BTW, that's crap about NOW telling you that you might have to stay overnight. I would complain to the BS. That's information you should have gotten when you were given the date. I'll be thinking of you and jumping in your pocket!

    HUGS!

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

    MarisaRose, Welcome! We're the best place you don't want to be. You'll find us warm, comforting, informative and funny. We'd love to help you but we need a lot more information. Please fill out your profile and make it PUBLIC so we know your diagnosis. Your age can make a difference too. Have you had genetic testing? Do you know the hormone and HER2 status of your cancer?

    I think that most of us would agree that in many cases, going with a lumpectomy is the best choice. If later a mastectomy is needed or desirable, you can do it. But you can't un-do a mastectomy. So we tend to recommend be conservative.

    What itching are you referring to? Did someone here reference itching or do you having itching now?

    Give us a bit more information in your profile (since that information is always displayed; if you put it in a post then it gets lost quickly as this is a very active forum).

    HUGS!!

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Hi Marisarose - Not sure what you mean by whats the itching caused by??

  • 614
    614 Member Posts: 851
    edited January 2016

    Dear Brightsocks:

    I was diagnosed with Invasive Tubular Carcinoma.  I also was diagnosed with pleomorphic ILC which gave me 2 primary breast cancers.  Just for fun, I also was dx with bifocal pleomorphic LCIS and numerous atypias.

    My MO said that Tubular Carcinoma is very slow growing and it is the "best" invasive cancer to be dx with.  It is good news that you have pure Tubular Carcinoma and not "Standard" Invasive Ductal Carcinoma as well.  My MO told me that if I was dx with only Tubular Carcinoma that my tx plan would have been just a lx and nothing else.  I am hoping for you that you will not need to have rads or anti-hormonal therapy.  I hope that you get your oncotype score back soon and the Her2 status back soon so that a tx plan can be worked out.  Good luck.  I wish you the best and an easy tx plan.

    Dear Hawaii:

    I am glad that you have no node involvement.  I was dx with pleomorphic lLC.  I was extremely lucky to be dx early.  My radiologist saved my life.  Lobular is so hard to detect.  I am always worried that more lobular may be lurking and that it will not be found.  It is very scary for me.  I guess that it does not help that it has been 1 year since my tx ended and I had a biopsy at 6 months and another biopsy at 1 year.  I always try to stay positive though.  I was told by my doctors in Florida that I should have a double mastectomy.  However, my bs at M.D. Anderson Cancer Center in Houston, Texas told me that a double mx was not necessary so I had a double lx, a breast reduction, and a breast lift.  Luckily, I did not need chemo so I had rads and I am taking Arimidex/Anastrazole.  I had an oophorectomy too.  I trust my doctors in TX and I also trust my MO in Florida who supported my decision to have a lx.  I wish you the best of luck with your decision.  It is a hard choice to make.  However, if I were in your shoes, I would have a mx due to the size of the ILC and the fact that it is bifocal.  Good luck.

    Dear Melclarity:

    Good luck with your decision.  Take all the time you need.

    Dear Mairew and Ary:

    I hope that you don't have to wait too long for your genetic testing results.  I did not have my results back in time for my lx.  It took 5 weeks for me to get my results back.  It took much longer than expected.  I should have had the results back prior to my surgery.  Luckily, my results were negative so my lx decision was a good one.  I do have a variable of unknown significance (VUS) but since nothing is known about this, there is nothing that I can do about it.  Good luck.

    Dear 1Step:

    I need a LOT of practice.  I loved your comment.

    Dear Blamoms:

    I am glad that you are node negative.  Good luck with all of your tx.

    Dear Poodles:

    My office is directly across the hall from our school nurses office.  All of the students go directly from the nurse into my office.  I keep a lot of lysol and Purel in my office!

    Dear Gemma:

    Good luck with the oncotype results.  Sometimes you just need a good cry.  I hope that you feel better.  Your daughter is gorgeous. 

    The RO's (I went for 2 opinions) in Florida both told me that I would need 6 weeks of rads.  My RO in TX told me that they would use 1 amount of radiation but that I could either have that amount given in 6 weeks or the same amount of total radiation given in stronger doses for 4 weeks.  They called it the "Canadian Study".  My RO told me that the Canadian Study 4 week plan would be better for me so that was my tx plan.  I was not a candidate for the one week rads or the IORT rads.  I needed whole breast radiation and more rads due to my dx.  Good luck with your decision on rad tx.  My cousin is starting rads on Monday at Sloan Kettering in NYC.  She will be having the Canadian Study 4 week whole breast rads too.  She was dx with DCIS in two areas that were next to each other and she had ALH but the tumors were less than 1cm.  However, her RO said that the study was from London.

    Dear Peaches:

    I desperately need St. Martin de Porres!

    Dear ChiSandy:

    I desperately need to see Bruce Springsteen!

    Dear HH:

    I desperately need a cute near sighted pig!  lol

    Dear Molly:

    I am appalled at your misfiled tests, the results of which may have changed your tx plan.  Unacceptable.

    Dear Marijen:

    Good luck with chemo.

    Dear MLP:

    I am glad that you have no node involvement.  Enjoy Boston.

    Dear AMaree:

    I really hope that you can get tx quicker.  Good luck.  I wish you the best.  You are so positive.  You are an inspiration to me with your wonderful attitude. 

    Dear ShopGal:

    I love your positive attitude too.  Good luck.

    Dear Brit:

    I am so glad that you are feeling ok so far.

    Dear Jclc and Peggy:

    My brother lives alone.  My mom and I are always worried about my brother because we are not near him to check on him.  He lives in Colorado and we live in Florida. 

    I am sorry for you Jclc that your insurance co did not pay for the genetic tests.  My insurance company told me that my surgery was cosmetic surgery and they refused to pay for my right breast.  Ultimately, they paid the bill but that was after a long fight.  I hope that your heart tests go well on Monday Peggy.  You will be in my pocket.  Good luck.

    Hugs to everyone.

    Please say a prayer for my cousin who will be starting rads on Monday.

    I will be going to a breast cancer retreat in February.  I cannot wait.  My other cousin from Maryland will be going with me.  She was dx with IDC.  My cousin from NY cannot go because she will be in the middle of rads.  One of the teachers whom I work with will be going as well (she had bc years ago and then a recurrence) and so will some ladies from my "Living with Breast Cancer Support Group".  I went on the retreat last year and it was terrific.  I am so lucky to be able to go again. I wish that all of you could go too.

     


     

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

    Aww....Brightsocks...hope you DO sleep well tonight. You have some answers and, sleep, the good kind, is recuperative. Rest well!

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

    Gemma....the good news is you guys have a little time for your AB.SO.LUTELY GOR.GEOUS daughter to deal with the things that go along with chemo....and, maybe she can go with you to pick out a really cute/hip wig? At that age they are usually just embarrassed to HAVE parents, you know?

  • 614
    614 Member Posts: 851
    edited January 2016

    Dear Karen:

    I felt fine with my double lx and with my rad tx.  I recovered immediately.  The SLNB was harder for me.  I wish you the best of luck with your tx.  It is scary but we are all here to support you.  Good luck.

    Dear 1Step:

    My surgery was supposed to be outpatient.  I arrived at the hospital at 7:30am.  However, there was trouble with the patient who was scheduled before me, so my surgery was pushed back.  I ended up staying in the hospital over night because I did not finish with surgery until 6:00pm.  When my surgery ended, my doctor and my mom were talking to me in the recovery room.  I have no recollection.  Apparently, I did a whole comedy routine.  I am so glad that I did not go home because I was still feeling the effects of the anesthesia and I don't remember anything and I was not coherent.  I don't believe that it would have been safe for me to go home. I was totally fine the next day.  Staying overnight was totally unexpected.

    Dear MarisaRose:

    Don't rush to have a mastectomy because you cannot change your mind once that surgery is done.  You can always have a lx and then opt for a mx but it does not work the other way around.  The survival rates are the same for a lx plus radiation as for a mastectomy, if you are lucky enough to be given the choice.  As other people posted, I do not know what itching you are referring to.  Good luck and welcome.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    614 - You are absolutely right re: lx v's mx thats of course if you have a choice based on your dx. I too was told that by my BS, I had nothing to gain from a mx...the talk now is purely precautionary and if Id prefer not worry about it anymore. I see my BS early feb to get more details to think about...but am in noooo hurry after what Ive just been through. Im feeling so good each day post chemo and starting to enjoy my life again. Of course if it was necessary Id do it tomorrow :)

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

    614, that's was an amazing post!! Gemma, gorgeous daughter. I really love her smile. Melclarity, your conversation with your son brought tears to my eyes. Welcome Mariarose.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Molly - Its an incredibly emotional journey isn't it?? The thought of it I too have tears down my face right now...its emotional getting to this point...I couldnt have done this journey without my kids...their love, support, acceptance, sensitivity and courage for so young humbles me. 3 muskateers

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

    You are a blessed woman, Melclarity. This has been the most emotional journey of my life. You look at everything through the lens of a potentially shortened life and suddenly little things don't matter anymore.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Molly - Its the little things isn't it?? in the darkest moments, you find hope and solace somehow. I'll never be the same and in a strange way isnt that a good thing? Id hate to go through this journey the last 4yrs and learnt nothing...about Me..my kids...my beautiful man and life. So much doesn't matter anymore. So great to have this place and support of such equally amazing women who just 'GET IT' how blessed are we all..

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

    Mustlove Poodles....where in GA are you..did I understand your last message right?

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