Don't know quite where to make my introduction

Options
holliewood
holliewood Member Posts: 38
edited March 2018 in Just Diagnosed

so I am starting here and if need to post elsewhere, hopefully someone will let me know.

In January 2018, I found a lump in my left breast and then a node, which led to a PCP appointment, which led to a mammogram the following day, which included an ultrasound, which led to a biopsy the following week and a dx of BC. I was staged initially at 2b by the surgeon, then upgraded to either 3 or 4, pending a PET scan which has not yet taken place. My insurance wants a bone and CT scan before authorizing a PET scan. I am ER+, Her+ and Pr-, have node involvement but don't know about mets yet (had the CT today). The bone scan is Wednesday and I start chemo on Friday. Due to the position and size of the node(s) and mass, my surgeon wanted to do chemo first to attempt to shrink the masses. ATM, my chemo will be TCHP, via a port that has been inserted below my clavicle. I think I'm going to be very grateful for that port, I'm sure it will make treatment much easier in the long run.

Before I go any further, I'd like to thank all the participants here, by lurking and reading, you've calmed some of my fears (tho they still rise on occasion) and have given me hope that even if I'm staged up to IV with mets, it doesn't have to be an immediate death sentence.

Comments

  • helenlouise
    helenlouise Member Posts: 420
    edited March 2018

    Hi Holliewood. Welcome. Sounds like a wirlwind for you with your recent diagnosis, scans and tests. Good to have the scans done so you can be staged fully. There is a forum for starting chemo in March so jump in there.

    I like you was very glad to find this website, the forums and lots of other warriors! Many good people sharing information and support.

    No port for me as I will only have 6 rounds of Chemo. As a triple negative there are no follow up targeted therapies like tamoxifen, so oncologist said no port. I could have a PICC line but I understand it is not as safe as a port. So whilst my veins hold out I will be getting a cannula each time.

    Hoping your scans are clear and your start to chemo is smooth.
  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi holliewood, and welcome to Breastcancer.org!

    We're so sorry for the reasons that bring you here, but we're really glad you found us and that you've found comfort in reading here as you start your journey. We hope we can all continue to be a big help to you as you navigate your treatment.

    You've certainly posted in the correct forum, as you are recently diagnosed. As you learn more about the pathology of your cancer, and treatments that will be put into place, you're sure to find other great forums here for you to learn more, meet others, and get answers and encouragement.

    One note -- according to your signature, you've been diagnosed with DCIS, but in your post you mention being originally diagnosed Stage IIB and now may be III or IV, pending test and scan results. DCIS (Ductal Carcinoma In Situ) is by definition a Stage 0 disease -- so did you mean IDC (Invasive Ductal Carcinoma)? The terms -- and everything else about a breast cancer diagnosis!-- can be very confusing, but we wanted to help you clearly share an accurate diagnosis so you can find others who can help.

    We hope this helps and we look forward to hearing more from you and supporting you as you learn more.

    --The Mods

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    DCIS is what I was told, but of course that may have changed and nobody explained that to me. I also thought that DCIS would be incorrect due to the lymph node involvement. I'm not sure it really matters at this point, though if you would like I could eliminate that part of my sig so it is not misleading to others.

    edit to add: I even questioned the nurse that called me with the biopsy results as I had already come here and begun reading. I think I'll just remove that from my sig.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited March 2018

    the port makes the chemo process easier. Even with only four rounds, I was glad for my port.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Hi there Holliewood. Just wanted to say hello and offer sympathy and support. This journey sucks. On a practical note, this is a good time to start asking for copies of all of your reports from mammograms, ultrasound, biopsy, bone scan, etc. Many of us got treatment at multiple facilities and things get confusing very quickly. Having all of the paperwork together helps a lot, especially when you get to a point where you want a second opinion.

    All best wishes and please let us know how we can assist.


  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited March 2018

    Holliewood:

    I'm SO sorry that you've joined out little club -- but very glad you found us. I could not have made it through 2017 without BC.org.

    The place you are in right now is the worst place. Once you get more knowledge under your belt and a treatment plan in place, the journey gets easier. I promise this.

    Please ask any and all questions. Someone will know where to direct you. And...there are a LOT of excellent lists here to help you prep for surgery. Tips/tricks that no doctor will ever tell you.

    We're here for you.

  • LiMa66
    LiMa66 Member Posts: 73
    edited March 2018

    Holliewood- sorry you're here, glad you're here. This cancer stuff sucks but there are some great people here.

    Welcome and best wishes for you as you begin this journey.

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    Funny you should suggest that Georgia1, because so far, the biopsy reports, my initial bloodwork, the MRI results and other reports are online. I downloaded them to my hard drive (and will also put them on a usb for safe keeping), as I wanted the reports for myself.

    So far I have had treatment at 2 places, with 2 physicians (Medical Onc and Med Surgeon), but am keeping those records in separate folders so they are easy to find. Both physicians are part of a much larger network, so that is convenient as well.

    Thanks for the tip, tomorrow is the first treatment. *taps foot nervously*

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    Thank you Eastcoast TS! I do not know if I'll have surgery. That depends on the chemo and how it goes, and it also depends on what the CT scan and bone scans show. Since nobody has called to cancel the appointment for tomorrow....I believe we are a "go" for starting chemo.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited March 2018

    Lots of good threads about chemo, too. Check those out. Many can advise and offer tips and insight.

    Thinking of you.

  • Micmel
    Micmel Member Posts: 9,450
    edited March 2018

    Hollie~I saw your posts on steam room. I posted there but I'll post it here too. Your signature line says chemo Tomorrow? I wanted you to know I'd be sending strength and thoughts of an easy time and get in and out! I've been there. If you need a shoulder. I'm around... we all are! Hugs ~M~ Good luck. Hang in there!

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    How was day one? Sending you best wishes and supportive thoughts!


  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    12 minutes ago Georgia1 wrote:

    How was day one? Sending you best wishes and supportive thoughts!
    **********************************************
    Day one will be tomorrow, but I'm taking all the best wishes and putting them in my brain box to look at tomorrow!
    Thank you Georgia1

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    Day 1 went well. I did not sleep at all the night before. One of the side effects of the dex for me is insomnia so I was wide awake right up to leaving. As it worked out, that worked FOR me rather than against me. We got there and since I had not had my chemo education, that had to come first, most of which I already knew but they still have to do it. That set my nurse back about 30 minutes and I think she was annoyed by that but whateves. I found out that the acronymn is TCHP but the actual administration of the drugs is backwards from that. So I got the Perjeta IV push first, then the Herceptin, then the Carboplatin and last the Texotere. I also got 2 pre drugs but no benedryl as I expected. Then about noon I hit a wall and slept through most of the bags. They also used a freeze spray on my port as I didn't use the cream correctly (thanks to no chemo education) so that will be corrected for next time. I was completely exhausted last night, but still didn't sleep well thanks at least partially due to the Dex. I will be taking a nap as soon as I'm done here.

    For any Type2 diabetics, the dex jacked up my numbers badly. When the numbers still did not come back down by yesterday even with limited food, I called my PCP who suggested using the Glipizide 2x a day rather than one and now my numbers have dropped pretty well. I was told the Dex would clear my system in 24-48 hours and on Monday I should go back on my regular schedule. I will also be keeping that in mind for next round.

    I got the Claritin and used it yesterday and today. The OnPro is scheduled inject this evening so we'll see how the next few days go. I plan on taking the last dose Monday. If that allows the pain back, then next time I'll use it on Tuesday too.

    Thanks for asking after me!

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Girl, I'm in awe of how well you are handling this. Thanks for letting us know, and hope you have a nice, restful weekend.

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    6 minutes ago Georgia1 wrote:

    Girl, I'm in awe of how well you are handling this. Thanks for letting us know, and hope you have a nice, restful weekend.
    ********************************************************************
    awww thanks! I don't think I've hit the bad part yet when the diarrhea will hit (if it does). I've got all my meds lined up and have a plan for food, but food already tastes different so I have a variety ready. Some sour/bitter, some smooth, some cold, a few sweet and some for heating. Bought a fresh loaf of sourdough bread yesterday so I can have crunchy toast if that is on the "good" list.

    This list has been invaluable to me, lots of great support and ideas to help me be prepared. Oh, and BTW, the nurse was something less than overjoyed that I was reading on the internet, perhaps because she doesn't know me and thus does not know that I am discriminatory about what I take from what I read. Again, that is something she can deal with, I've already made up my mind that this is not full of trolls and bad information.

    But anyway, thanks! I plan on paying forward once I have a bit more experience under my belt.

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    welp, the bone aches have arrived. Got here last night. This is miserable. I've been taking the Claritin, if I had not I wonder how much worse this could be. I'll be spending a lot of time sleeping today, thank goodness for Tyelenol.

  • illimae
    illimae Member Posts: 5,710
    edited March 2018

    Hey Holliewood 😀 I haven’t seen many of us with the same ER+/PR-/HER2+ profile around here. Sound like your first treatment when well and you have good food plans. Hopefully you don’t have taste issues right away. I was about 1/2 through when it hit me and everything tasted like ass sweat. I pretty much lived on fried rice and ramen noodles for like 6 weeks. Rest well.

  • holliewood
    holliewood Member Posts: 38
    edited March 2018

    thanks Illimae! It has been a day of sleeping mostly. Since I am retired, and the kids are grown, it's just me and the dogs so I can sleep when I want/need to. As tired as I am, and as badly as I hurt right now, I cannot imagine going through this with small kids who need lots of attention. I had a 3 month PCP appt this afternoon and was surprised that my A1c was not higher than it was, grateful but surprised. Next one may be higher, oh well, it is what it is and we'll deal witg what comes, right? After I got home, I was wiped out for 3 hours, sleeping in the recliner and I'll be heading to bed shortly now.

Categories