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CALLING ALL STAGE I SISTERS

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  • cakeisgreat
    cakeisgreat Member Posts: 188
    edited November 2009
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    This thread is really fun!

    Hmm...Yep, if I had gone with the mx instead of the lumpec, I would not have had to do rads.  But I was afraid NOT to do rads at the time, so I was very confused as to what to do...My surgery was one week after a bombshell dx (37 at the time and my FIRST mammo with no reason to get it except my gyn said... "why dont u get a baseline." so like a good patient, I did...had NO idea, I had cancer in there!   

    Aabinion--you crack me up with the boobs sticking out more than the stomach.  I whole heartedly agree!

  • turtle42
    turtle42 Member Posts: 31
    edited November 2009
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    What a great thread. I am another stage 1 here and three years out, tho I dont post much. I get a TM check every six months and also a chest x-ray. Does anyone else get a regular chest x-ray? I just had a 6 month follow up and was so nervous for about a week before. Had a great check up and everything is fine for now. Mammo coming up in January, just glad its after Christmas.

    Jackie

  • fortunate1
    fortunate1 Member Posts: 467
    edited November 2009
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    Hi, another stage 1 here. I sympathize with the fear of mammograms. I am on the sloooow crawl through my one year anniversaries of bad stuff. Three months of fear between the lump and the surgery. The one year mammo is coming up in a few weeks. Here's hoping like crazy for smooth sailing and no fear. After all, I am fortunate in this BC world, as are we all. We found it early. Is it OK to say that? or even think that?

  • cakeisgreat
    cakeisgreat Member Posts: 188
    edited November 2009
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    turtle--I had a chest xray every 6 months for a melanoma I had in 2004.  Maybe standard for some oncs?

    :)

  • sheila888
    sheila888 Member Posts: 9,611
    edited November 2009
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    turtle42...I don't get chest xray but get TM every 4 months. And still get nervous before and after.

    fortunate1...I think nervousness is pretty normal. Good Luck with your mammo.

    Welcome ladies and you know where to go when you are anxious or not.

    Wink Sheila

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009
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    Ah another club that I fit in.  I found my lump 12/21/08, diagnosed 12/24/08 and bilaterial mast. 1/8/09 followed by 6 rounds of TCH.  So I always joke I am one and done on the mamograms.  I am 32 so my baseline was my 1 and done :).  I am know planning to get some new foobies after 2 sets of implants failed but I am going to enjoy the holidays and get them after the new year.  I am being stingy and I want to spend time with my babies over the holidays doing fun stuff. 

    I currently am still on Herceptin and will be until Mid. february and I have had a bone scan, CT scans because of problems and that is it so far.  I only get scans if something is off so I hope I never have a scan again but I know that I will for my flap surgery. 

  • sheila888
    sheila888 Member Posts: 9,611
    edited November 2009
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    Jaimieh....I did Herceptin for 52 weeks. Celebrate the Holidays with your little ones. I see you were DX on Xmas eve day. This year you celebrate your life and Christmas together.

    I'm glad you found us.

    Smile Sheila

  • sheila888
    sheila888 Member Posts: 9,611
    edited November 2009
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    Sheila
  • valjean
    valjean Member Posts: 1,110
    edited November 2009
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    I am feeling so comfortable on this thread. Thank you all! Sometimes I have felt that I just really wasn't "fitting in".

    boobytrapped ~ I know the feeling of your 1-yr mammo, just had mine done Oct 28. Whew! So stressfull, but report came back "benign/negative findings". My right affected breast still doesn't quite feel right after the rads. Feels full (?) for lack of a better word. When the ob-gyn did the breast exam, he pushed firmer than I do when I do my SBE. It surprised me that I was still so tender.  

    Best wishes to all who are nearing their 1-yr mammo!

    Sheila ~ 4 years!! Wow, how wonderful! And someone was three years, forgot who - so great!

    fortunate1 ~ I feel as you, is it okay to even THINK that we are fortunate to have found it early?? I honestly don't think I have completely wrapped my head around it all, even after one year.

    I think I have found my "corner". I'm so glad I found you all...

    {{hugs}}

    Valerie

  • deborye
    deborye Member Posts: 2,441
    edited November 2009
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    WOW, this place is really hoppin. 

    Again, Welcome all the Newcomers♥

    I am Stage 1 as you can see down below, what worries me is an Ocotype test, so I don't know what it is.  Did not need chemo even though I questioned my BS, Rad Onc and Onc they all said, "No."  But I still worry.

  • hmm
    hmm Member Posts: 957
    edited November 2009
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    Deborye,

    Possibly the oncotype test may not have existed back when you were diagnosed....or was very new and not widely used. Just guessing. They use it as a factor in determining treatment. I did have it but as the onc said a low number does not mean for sure it will not come back nor does a high number mean it will.

    I can relate to the "worry" .................... I excel at it !!!!!! Let's all try not to do as much of that.

    Hope everyone has a good day!

    Pat 

      

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009
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    Thanks Sheila I plan on enjoying the holidays this year. 

    Has anyone else here had reconstruction problems while stage 1 ??

  • don23
    don23 Member Posts: 213
    edited November 2009
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    Deborye - I too can relate to the "worry". I had an oncotype test done and it came back with a score of 11 with a 7% recurrance rate. I did not do chemo or rads either. I am just on tamoxifen. I do get scared when I think about the fact that I did not do chemo and what if it does come back? How will I feel? But when the decision was made that I didn't need it - I said OK and told myself to never look back at that decision. Some days it is very hard but I can honestly say I am not thinking about it as much as I used to.

  • sue-61
    sue-61 Member Posts: 262
    edited November 2009
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    Jaimieh, I didn't have reconstruction but the BS had me remove my own drains (I am a nurse but I will admit I got a bit WOOZY when I kept pulling and pulling and pulling the tubing......like I think I said before I reminded myself of the magician pulling scarves out of a hat) and I am stuck with a seroma on one entire side. I had bilat mast w no recon. I had the darn thing drained twice (150 cc each time------like 5 ounces) and now they are telling me to massage it twice a day. It is diminishing and I see BS next wk. They were talking (last May) about revising the incision but I really hate the thought of any more surgery. I am just fearful that I will "miss" any recurrence due to the seroma.

    And to others.....I never had ONCO type done either. Wonder what gives with that. Like I said previously somewhere, I am retired RN, did mostly cardiac nursing/casemanagement and know ZIP about oncology or breast cancer. 

    Nice to see you all so active on this board! Sue (edited as I spelled zip wrong......)

  • sheila888
    sheila888 Member Posts: 9,611
    edited November 2009
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    Good Morning Ladies.

    Sue... I never had Onco type either. I think they have more tests now than when I was DX.

    I have an app with my eye DR today. Maybe a new pair of glasses will help to see the Board clearer.  LOL

    Have a good day my friends.

    Smile Sheila

  • Makratz
    Makratz Member Posts: 1,605
    edited November 2009
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    I was dx in 6-08 and had the oncotype.  If I remember correctly my onc said it was  new test that had been out for about a year or so.  I'm glad I took it because of no chemo for me!  Just rads.

  • elimar
    elimar Member Posts: 5,885
    edited November 2009
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    Before the Oncotype Dx became accepted, some women had the Ki-67 (a gene marker) test done; or maybe that was performed as part of the final pathology.  I think that might still be one that is included in the Onco Test.  I don't know much about it.

  • OG56
    OG56 Member Posts: 377
    edited November 2009
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    I had a small tumor in 2008 and because of my stats no Oncotype. Had lumpectomy and Mamosite radiation. At the one year point had a new BS she wanted me to have a MRI. Both breasts enhanced had months of waiting and 2 biopsy's 2 lumpectomies to find out I have a rare breast disease named Pleomorphic LCIS. Just taking a break and trying to decide if I will have bilateral MX or take the close observation route.They don't know jack about this diagnosis.

     My BS now say's that everyone that has any invasive component (2mm for mine) now has the Oncotype test. I am hoping I didn't need Chemo, but what's done is done.

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009
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    Sue I am sorry to hear about your seroma's.  I had a bunch of them and I am hoping that my last surgery (last Monday) was enough to take care of them.  I felt a teensy bit of swelling on my one side today so I wrapped myself as tight as possible with an ace bandage.  I wish these darn things would just stop.  Enough is enough.... 

    I have 77 days until my flap surgery...whhooo.. :)

  • dash
    dash Member Posts: 173
    edited November 2009
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    Wow, I'm gone for a week or so and the board goes through more changes! Well, hi all I'm a stage oner too. I was diagnosed back in 2006 and had the oncotype testing done. It came back at the high end of intermediate risk so that pushed me right into chemo. I had a bilateral mast done with immediate placement of silicone implants. Now, I'm planning a redo with some of the chemopause fat to be used for new boobs on Jan 26th! Jaimieh, what kind of flap surgery are you having?

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009
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    Bayyyy~ I am having some type of Gap with Dr. Sullivan at NOLA.  So far I have the option of doing SGap or Lower Lumbar flap.  Are you doing Diep ??

  • hmm
    hmm Member Posts: 957
    edited November 2009
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    Bayyy.......... was surprised to hear how long the oncotype test has been around! I think many of us thought it had not been around that long. Best wishes with your redo.

    Pat

  • DebbieSawyer
    DebbieSawyer Member Posts: 30
    edited November 2009
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    Hi everyone! I've been gone a couple days, now back and glad to see this forum going STRONG---Yahooooo! Hi Sheila, Sue-61, cakeisgreat, hmm, makraz, and others I haven't met yet, but who are making this the best forum! Read up on the posts, and it's hard to catch up on the past conversations, so I'll just jump in, regarding the oncotype. It was offered and I had the test done, but results not back yet. My onc said "only order it if you're prepared for the consequences", meaning if it comes back a high score, chemo is a must, no choice. I'm gambling that with my 1's across the board (1.2 cm, Stage 1, Grade 1), my onco score will be low.

    My infected SNB site (with seroma from hell), has postponed re-excision surgery until Thanksgiving week. Rads for Christmas, yippee. :(

  • cakeisgreat
    cakeisgreat Member Posts: 188
    edited November 2009
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    Hi all! 

     I tried to get the onco test, but I didnt have enough "material."  I had 5 cm of DCIS all over the place, but the invasive part was .1 mm and .2 mm.  So no chemo, but I wish I knew what my "score" was because I get worried that rads wasnt enough.  Although....

    My double mx and DIEP flap recon is set for on or within a few days of Feb 17 (waiting for final), so either way, I'm getting rid of most of the cells.  I just hope I'm doing enough!

  • fortunate1
    fortunate1 Member Posts: 467
    edited November 2009
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    I got the oncotype test after a unhappy little battle of miscommunications. It came back with a score of 20.5 which is in the low intermediate category. My ONC said definitely no chemo, which surprised me but I trust him. I have to figure the MX got everything, no nodes is wonderful and Femara is my insurance policy. I worry anyway. I think we all excel at it. 

  • deborye
    deborye Member Posts: 2,441
    edited November 2009
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    I have to trust my docs also, if all three agreed with each other and worked as a team then I'm satisfied.  I did have the Ki-67, I don't remember the results and I don't feel like looking at my path report, so it must of been OK.  I had excisional biopsy 2X to get clear margins, my BS said one of the margins was too close for comfort.

    "Cancer is a rock in the path; step over it, the path will still be there."

    Welcome back Debbie♥

    Debbie

  • Jaimieh
    Jaimieh Member Posts: 925
    edited November 2009
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    I thought for sure I would need to get the onco test when I was first diagnosed instead I got the ticket to chemo.  HER2+ 

    Cakeisgreat~ Where are you having your Diep done at ??

  • cakeisgreat
    cakeisgreat Member Posts: 188
    edited November 2009
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    GREAT quote deborye!

    Jaimieh--I'm having it done at Luke Roosevelt Hosp in NYC.  My surgeons are these guys on the link...Dr Samson will be heading it up and Dr Smith will be assisting.

     http://www.orlive.com/chp/videos/breast-reconstruction-deep-inferior-epigastric-perforator?cmpid=active_redirect

  • sheila888
    sheila888 Member Posts: 9,611
    edited November 2009
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    Hi OmahaGirl, I'm using the screen name because there are other Linda's and Debbie's on this thread. How is your broken body healing up. I'm sorry when I read your post I was hysterical not to your injuries but where and how it happened, and how you described your experience. I'm glad you are here with us.

    Bayyy.. Welcome to our little friendly group. 

    Wink Sheila 

  • Makratz
    Makratz Member Posts: 1,605
    edited November 2009
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    Debbiesawyer, I feel so bad that you had an infected snb site.  I had a lumpectomy and SNB.  The worst part of my seurgery and recovery was clearly the SNB.  It was so painful and uncomfortable!  I can only imagine what it must be like to have it infected.  Ouch!  Take care of yourself.

    I find it interesting to see everyone Oncotype score and their decision to have chemo or not.

    Hello to everyone!