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A place to greet and meet newbies to stage III

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  • JFV
    JFV Member Posts: 341
    edited November 2013
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    Hi ladies ! I am not on BCO very much any more but I thought I would say Hello. I have been on the stage three merry-go-round since March 2010. Not only was I stage three, but I was grade three, had multiple tumours, IDC as well as ILC, AND was stage 1a in my other breast. I was a basket case for months and months. But, I am still here !


    Please remember that survival statistics are at least 5 years old by the time they are published and there have been many improvements in BC treatment since these studies were started.


    Please know that the early stages of diagnosis and treatment are the most physically and emotionally difficult. Be kind to yourselves and try to do something each day to lift yourself up or at least distract you. Believe it or not one day you will wake up and your first thought will be something other than cancer.

  • Enerva
    Enerva Member Posts: 2,985
    edited November 2013
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    Thanks JFV :)


  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    I am pretty sure I am a Stage IIIa.. My path has the TNM staging. T2,N2a,M0 I am triple positive, and mixed lobular and ductal. Just got the report at my post-op visit today. Still need to find out if the complex cyst found on right ovary is benign or not. Margins were clear from lumpectomy, but too small. Once we figure out if ovary needs to be removed, will be back in for mastectomy and port placement. Will know tomorrow I'd we are adding oophorectomy to the mix. Stressed out about the port, have really crappy veins..

  • Enerva
    Enerva Member Posts: 2,985
    edited November 2013
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    Hi RobinLK yes this is very stressful i am sorry to hear, We are here for you, keep positive the port should be ok once its in they say you wont even feel it. All the best of luck



  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited November 2013
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    Hey, Robin...my port went in on November 7, 2011, and was removed during my DIEP reconstruction on April 15, 2013. The tiny surgery to put it in was nothing. They gave me sedation and I don't remember a thing, and although my chest was a little bruised and sore afterward, it wasn't bad.


    To help get it in a comfortable spot, put on your favorite comfy bra and use a Sharpie marker to dot in an outline of where your bra edge and straps lie. This will help your doctor to NOT put the port directly under your bra cup or strap.


    Having the port made treatment much easier. No more stabbing around to find veins, even for lab draws. I wasn't sad to see it go, but it did its job and I was glad to have it when I needed it.


    Try not to stress about the port. For me, anyway, it was a great tool that helped me win this battle.

  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    Thank you so much! The port will go in when the MX is done. I will be under, thank heavens. Not sure how the bra thing will work, no reconstruction for me. Will not be able to use prosthetic for awhile either. I think it will be t-shirts for a bit.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited November 2013
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    Oh, got it. I thought you were stressing about the placement of the port, but if you'll be under anesthesia anyway, it's truly no big deal. So what about the port is bugging you? And why will you not be able to wear a prosthesis for a while? I had to wait a few weeks for the incision to heal to be ready for the silicone prosthesis, but until then I wore a soft, fiber-filled puffy thing. But we're all different, and comfort is the goal here.

  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    Just the thought of it has me nervous. Where the cath tube goes, that sort of thing. My BS has to clear me before prosthesis can be worn. Is the cath tube the same material as drain tube? I had an issue with a cath post bladder surgery with skin necrosis. Have not had issue with drain though.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited November 2013
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    It's all under the skin--you can't see anything except a little lump close to your collarbone. The PowerPort is the most popular model, I think, and it's mostly constructed from polyurethane. Here's the website: http://www.bardaccess.com/port-powerport.php. The concept is different from a bladder catheter--there's no contact with the skin to cause any kind of necrosis.


    Yeah, it's a little creepy, but after a while I forgot it was there. It's pretty easy to ignore--doesn't hurt or get in your way. Just a tool to get you through chemo as comfortably as possible.

  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    Thank you so very much!

  • lorreymom
    lorreymom Member Posts: 9
    edited November 2013
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    I guess I get to join this group now. Just got my pathology report back today. Looks like I am stage 3A, ER+, PR+, HER2-. Just had mastectomy of my left breast and I am doing well. Waving a positive hello to all those travelling on the stage 3 journey.

  • Enerva
    Enerva Member Posts: 2,985
    edited November 2013
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    Welcome Lorreymom lol glad to hear you are doing well from your surgery. Waving back to you. lol

  • hopefour
    hopefour Member Posts: 104
    edited November 2013
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    Lorreymom...welcome! Not easy hearing your path report and hearing your stage III, but as you see there are lots of us and many of us doing well! Please, feel free to ask questions, share fears, reach for hope and know you're not alone!! Remember you WILL get to the other side of treatment..it will end and life will go on!!

  • martha323
    martha323 Member Posts: 17
    edited November 2013
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    Greetings and thank you, hopefour, for starting this thread! I feel like a newbie to Stage III even though I was diagnosed almost year ago ... I finished radiation on September 5th and also started Arimidex - actually, the generic anastrozole - about the same time. I'm in a clinical trial, receiving Herceptin for a year even though I'm Her2 low (1+).


    I have a cold (ugh!) and am hoping that I will still be able to get Herceptin tomorrow. No fever, so I should be ok? I'll admit straight away that I'm prone to anxiety, however, this experience is teaching me how to deal with it - it's a process, though. Lol. Anyone else on Herceptin?


    I haven't had a chance to read each post - hope to catch up .. Peace to all

  • RosesToeses
    RosesToeses Member Posts: 244
    edited November 2013
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    Welcome, Lorrymom and Martha! And, Martha, congratulations on getting through the really arduous stuff, hope the Herceptin and AIs are good to you!

  • Alice57
    Alice57 Member Posts: 1
    edited November 2013
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    This is my first post.I am stage 3 with lymph node involvement. It is invasive ductal carcinoma.I have completed 9 taxal treatments but the ultrasound which was done did not show any size difference after 6 chemo sessions,I still have 4 months more with 3 months of Ac.Then I have surgery and radiation.i have applied for social security/disability. I was told they have to wait till after the surgery before completing my application.i had a traveling job which I can no longer do.anyone have any experience with this?

  • lindacam
    lindacam Member Posts: 97
    edited November 2013
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    Hi. I was diagnosed in April with IDC...2 tumors under 5 cm and 2 nodes on MRI involved...Have just finished 6 months chemo..doing 6 weeks rads then BMX.. Some doctors say 3a as they add the tumors together and some 2b if they don't. Does really change anything? ER +PR+ Her2-

  • Holeinone
    Holeinone Member Posts: 1,418
    edited November 2013
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    I am joining your group, will try to catch up..6 chemo treatments, 2 to go. I am similar to everyone, still in shock that I was dx with stage 3. Trying to be "tough", this website is going to help me. Thx to the ladies who share their stories of years of good health post this scary time.

  • gillyone
    gillyone Member Posts: 495
    edited November 2013
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    Welcome Alice, Linda and Hole. Yes it is shocking to find out you are stage III. But it honestly gets better as time goes on. This is a place you don't have to be tough - you can share your feelings, or rant away to a bunch of ladies who know exactly where you are coming from. Take heart that many of us are doing well some years out from treatment, and there are many more doing well who don't even come to the boards any more.

  • Holeinone
    Holeinone Member Posts: 1,418
    edited November 2013
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    Martha, hello I have a question about the arimidex. How was it decided which drug to take? The generic or the real thing? I will start in Jan. or maybe when I'm done with rads ( not sure ) but curious about the difference and who decides which is the better drug.

  • peacestrength
    peacestrength Member Posts: 236
    edited November 2013
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    Martha-what Herceptin clinical trial are you in?  I also sent you a pm.

  • Holeinone
    Holeinone Member Posts: 1,418
    edited November 2013
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    I'm trying to catch up, holy smoke ! Too many of us ! Robin, if I have this correct, you are having surgery in a couple of days? Good Luck...the port is nothing, minor pain, easy compared to all the rest of the procedures. Gill, thx for the support, we all need to hear from the ladies who have been there & are now living a normal life again...

  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    Holeinone, surgery is on Thursday! Ready to be done with that part and move on to the rest. Know it is still a long journey but ready to keep moving forward!

  • hopefour
    hopefour Member Posts: 104
    edited November 2013
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    Welcome to our new sisters!!


    Martha...thank you for doing a trial and hopefully it will benefit you also!


    Alice 57... sorry about your not being able to fulfill your job any longer..don't have any info to help you. Hopefully after all the chemo you will no longer have any remaining tumor...die cancer die!!


    lindacam...Congrats on finishing chemo...thats huge!! I hope you will find that rads are not as difficult as chemo, I did. Please keep us posted when you have your BMX. As far as being stage 2 or 3, I don't think it matters much as the treatment is much the same when nodes are involved.


    Holeinone....I really don't have an answer about the generic verse arimidex. I have asked several doctors about which is better between Fermara and Arimidex and am told there is no difference. Thanks a great question about the difference about it being generic! Let us know what you find out and hopefully some of our sisters will know too!


    Gillyone...thank you for sharing encouragement...I am always grateful!!


    RobinLK...Praying Thursday goes smoothly for you. I think you are having a port and MX done, not sure if you are also having a ooph. Please keep us updated. I had a BMX and didn't find that to be as painful as I had thought, but I also didn't start the reconstruction procedure either, so that makes a difference!


    My hope for each of you is that being here with us you feel a bit less lonely, a bit less frightened, and a LOT more hopeful.

  • robinlk
    robinlk Member Posts: 363
    edited November 2013
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    Hopefour, thank you for the prayers. You are correct MX and port. Ovaries were benign poly cystic buggars. They are staying in for now. Will be revisiting them at a later date. Will be having another pelvic ultrasound in December just to keep an eye on them. No recon for me. I will go with a prosthetic for balance if I feel the need. Should start chemo in mid December, MO is aiming for the 12th. Have my echo scheduled for Nov. 25th. Will be doing A/C every 2 weeks for 4 cycles and then T/H every 2 weeks for 4cycles and then continuing the Herceptin every 2-3 weeks for a year from initial start date. Tamoxifen will appear later for 5-10 years. No solid time frame on that yet.

  • lisa137
    lisa137 Member Posts: 32
    edited November 2013
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    Thanks to those who welcomed me when I first posted here. It is much appreciated.


    Ironic that I posted about feeling so good that day, having 4 out of 5 drains out, and napping on my side, because that same night, I suddenly developed a fever of 101.5. Felt like over-baked crap. Sent to the hospital the next day by my surgeon for blood test, urine test, and chest x-ray.


    The fun part of this---even though thru the entire experience I was in danger of either barfing or fainting on the hospital floor--was when I went to be x-rayed. First the little x-ray tech--she looked to be about 14 years old haha---asked me if I was wearing a bra. I looked down at my perfectly flat no-reconstruction chest, looked meaningfully at the piece of paper she was holding that had BMX written on it in great big letters and told her "I don't have anything to put INTO a bra...." Moments later, she has me at the x-ray machine and asks me to reach wayyyy above my head and grasp the bar with both hands. I said "You have GOT to be kidding me." I demonstrated exactly how high I could NOT raise my arms. A few moments after that, she's back at her little panel with another tech and I hear snippets of confused conversation....finally the same girl asks me 'Ummm...do you have a surgical drain?" LOL What did they THINK they were seeing on that x-ray? I should have said "nope" just to scare them. What an experience!


    In any case, the x-ray was clear, the blood test was clear, and the urine sample "didn't show enough cultures" to give any answers, so basically no one knows why I ran a fever off and on for 3 days, felt like absolute crap, and wound up with anxiety attacks due to the entire ordeal. Just when I'd been doing so well, too!


    Whatever it was, it cleared up a few days later, I got a script for Klonopin, finally go the fifth and final drain out, got half my staples out, and have improved by leaps and bounds over the past week. Chemo may or may not start on Monday, depending on who wins the "is she healed enough for a port and chemo" battle between my surgeon and oncologist, and I'm feeling reasonably good most of the time. Til the next crisis, I reckon. :)

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited November 2013
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    Alice, the AC will suck BUT you will love that it will shrink those suckers! Really very likely. V

  • Enerva
    Enerva Member Posts: 2,985
    edited November 2013
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    Lisa i will have you in my thoughts, I am sorry you are having such a ride. I can relate to you regarding the lack of knowledge the tech have when dealing with us. I keep wishing one day some one will wake us all up from this nightmare. Take care    

  • RosesToeses
    RosesToeses Member Posts: 244
    edited November 2013
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    Robin, praying for you today and tomorrow--hope everything is as easy as it can be for you!


    Lisa, I love the way you tell a story! All I can think of, though, is how if technologists were allowed to look at you and guess, there's a good chance they'd offend a lot of women by assuming they didn't need bras--sometimes you just can't win! Glad you're feeling better, hope you continue to feel well.

  • lisa137
    lisa137 Member Posts: 32
    edited November 2013
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    @Enerva --- Thanks :) I'm really doing great at the moment. Once that fever went away, I started really healing and feeling better almost by the hour, and haven't had any setbacks since, so I consider myself pretty lucky, all things considered. The person who really has had the rough ride has been my husband---such an incredible guy, I can't say enough about all that he's done and how he's handled all of this.


    @Roses -- I love your username; it makes me smile. :) You make a good point that I hadn't thought of: I guess some women could be offended if it was assumed they weren't wearing a bra when they were, lol. During the first couple of years that my husband and I were living together--but before we actually got married--I gained some weight, 15 or 20 pounds maybe, and an older lady who is sort of an acquaintance of ours saw me for the first time in quite a while and asked me "When is your baby due?" I wasn't pregnant (and I was 45 years old!,) and said so, and she kind of stammered a bit and then said "Oh...I heard you were." Bahahaha. I felt bad for her, and I wasn't offended at all, but I DID laugh about that off and on for hours afterwards.


    You know, even though we've seen her here and there, I don't believe she has ever spoken directly to me since then. I love people. :) I even sort of enjoy the people who, now that I have (had?) cancer, mean well but don't really know what to say, so manage to say the wrong thing--I guess because I was exactly where they are, just a few months ago.


    One of my friends said "It sounds like you caught it early, so that's good!" Errr....my tumor was 5.5 cm., I'm IIIc, had spectacular node involvement, and my onc says it was probably there for years...lol. I didn't try to explain this to my friend: It would only make her feel bad, and you know, assuming my upcoming bone scan doesn't give me any unwanted surprises (pray pray pray,) we caught it early *enough*, right? Right.