Lumpectomy Lounge....let's talk!

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

    LovesToFly, way back when I was in my teens and 20s, I took Medral (cortisone) for my allergies. Obviously, your situation is different but when I started them, I went from 6 the first day, decreasing down to one day by day. Also, when I went off them (when snow started), I would wean myself off them. I always had diarrhea (not terrible) when starting. I like your idea of taking 1 for the next 2 days. Jumpstart with 2. But you figure out what works best for you! Love the wigs.

    HUGS!

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

    Argh, I meant border collie. My brain has quit for the week!

    JcLc, your radiation plan seems to be the same as mine was. I'll bet your anxious to get chemo over, too!

    HUGS!

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

    LTFly- Cute, cute wigs!!!

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

    yes I think I'm going to do the one a dayplan, I'm feeling pretty good, so I don't want to go backwards on that by giving myself a bad steroid withdrawal. And the pharmacist did say it was OK to try, so why not?

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

    Amber, what a beautiful puppy. Don't be surprised if you skip the oncotype Dx and have chemo based on your young age. They think that the cancer is more aggressive in young women. My sister was 24ish when she had breast cancer. They did a modified radical mastectomy and no further treatment. She was over 30 years cancer free.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Loves to fly - seems to be with alot of people 2 a day..down here its one a day they only give 3 pills dont want you taking anymore.

    Jclc - Is that the Taxotere youre having?? what was the first round chemo you did? I had 4 infusions 3 weeks apart then 8 weeks of taxol weekly, so total of 12 was my treatment, took 4.5months. It is tough for sure. I wish you well.

  • Melclarity
    Melclarity Member Posts: 388
    edited January 2016

    Molly - Thats great news about your Sister!!! My Mum was 40 when she got BC she had a mastectomy and no treatment she was 26yrs free!

  • Sloan15
    Sloan15 Member Posts: 896
    edited January 2016

    Melclarity and LTFly - Rock the wigs. They look great!

    AMaree --That is the cutest little picture of Ava! Makes me almost want a puppy--almost!

    Let's break down the info on your report. You are ER+ strong, PR+ strong (not sure what diffuse means), and Grade 2. The doc will need to find out if you are HER - or +. You said he will also do the BRCA test.

    • The BRCA test is to see if you have the gene that makes it more likely for you to get breast cancer in your breasts.
      • BRCA+ =If it is BRCA positive, then "aggressive" means they might do a mastectomy to keep the cancer from coming back. There is no immediate rush on that, but they encourage it if you have the gene. Some people don't take any chances and have it done right away, and others have children and then get the breasts and sometimes uterus removed, and some do nothing with the info. Most doctors recommend mastectomy if you are BRCA+. The doc recommends the when and what should be done. Some people wait until after having children to have this done, some don't.
      • BRCA- = BRCA1 or BRCA2 negative means a person doesn't have the genes, so it doesn't affect them. Most people don't have this gene. Some people, like me, have a weird mutation of a gene in the BRCA test. Sometimes is means get a mastectomy, sometimes they don't see any connection with cancer and don't know why there is a mutation (like mine).
    • The OncotestDX is a guide to see if chemo is recommended. Usually people with strong ER+ strong PR+ , clear margins, no node involvement and HER- have low or low-intermediate scores. You need to find out your HER status.
      • LOW Score = no chemo is recommended as there is a low chance of the cancer returning
      • INTERMEDIATE Score = Scores closer to the low end probably have cancers that will not return, so probably no chemo depending on what the doc says. Scores closer to the high end may or may not require chemo. This is where most cancers fall, and this is where you get your docs opinion based on current research.
      • HIGH Score = Chemo is usually recommended to get the sneaky little cancer cells. If you are HER+ and/or PR-, "aggressive" means that they will probably do chemo, but not always.
    • HER cancers can be - or +.
      • HER+ =About 1 in 5 cancers have a gene mutation for HER and are called HER+. The HER protein can promote the growth of cancer cells, so there is a specific chemo to kill HER+ cancer. Chemo is often recommended, but not always.
      • HER-= HER- people don't the gene that makes the HER protein, so it doesn't affect them.
      • You will find out if your tumor is HER + or -.
    • ER and PR
      • ER+ (strong)/PR+ (strong) =The paper says you are strong ER+ and PR+ (which is good). I'm not sure what "Diffuse" means on your report, but it says you are strong. So, you'll most likely be on the Tamoxifen pill (for premenopausal young people) at some point to prevent the cancer from coming back. The medication binds to ER receptors so the estrogen doesn't make the cancer grow. Most of us, 80%, are on the meds. It's pretty darned effective, and docs been using it successfully for more than 30 years. (For menopausal women, they sometimes go on a different med called an AI).
      • Some people are not strong or negative on one or both of these, and docs sometimes, but not ways, do chemo to be "aggressive."
      • Some people have TN cancer, or triple negative cancer. They are ER-/PR-/HER-. The Tamoxifen/AI doesn't work for them because it's not an ER cancer. They usually do chemo on this type of cancer. The medicine is a specific chemo since their cancer isn't ER.
    • GRADE
      • 1=slow growing
      • 2=med
      • 3=Fast growing, so docs often, but not always recommend chemo.

    It sounds so overwhelming, but this stuff just gives doctors specific information about your tumor so they can make the best decision for YOU. Breast cancers are not all the same like people think; different tests tell what works and what is needed. So, many of us are saying you need to get the BRCA and find out if mastectomy is recommended or not. Find out if you are HER + or - to give your doc info on chemo. If chemo is still a "maybe" then get the OncotestDX as it gives doctors an an idea of how aggressive to be. Sometimes when the OncotestDX is intermediate, aggressive means chemo when you are younger. Chemo is doable.

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

    thanks guys I do love my wigs, so I hope I find them comfortable. But if not, I'm sure I can look OK with a hat or scarf!

  • 614
    614 Member Posts: 851
    edited January 2016

     

    Dear Gemma, Muso, and Octo:

    Congrats.

    Dear LTF:  Your wigs are outstanding.  I hope that you feel better.

    Dear Sloan:

    Your hair looks great.

    You had a VUS-Variable of Unknown Significance on the Genetic Testing just like me.  They think that mine may be for the colon but do not really know what the mutation if for.  I had a colonoscopy and they found a pre-cancerous polyp.  It was removed and there is nothing to worry about.

    Dear Melclarity:

    I am glad that you hair is starting to grow back and that you are starting to feel better.   Your wigs look great.  You are beautiful.

    I am so sorry that you had that difficult ordeal while you were undergoing chemo at your job.  That is awful.  I'm glad that you were able to go back to your old school.

    I am 51 and I have been a single parent for 16 years.  My husband left me for someone else the day after my son's 1st birthday.  We got pregnant through science because I couldn't conceive.  What fun times!  lol. I am much better off without my husband.  My daughter is now 20 and my son will be 17 this month.  Yes, my life is very difficult but I am truly lucky.  I have a job that I love, wonderful kids, and my mom and brother are phenomenal.  My boyfriend is great too.  I also have good friends.  What more could I ask for?
    Well, I guess there is always...winning the lottery. 

    Dear Amber:

    You sound like an amazing person.  Welcome but sorry that you must be here.  We will all answer your questions and be there for you.  You have just been adopted by a wonderful goup of women.  Ava is absolutely adorable. I concur with all of the other posts.  The waiting and worrying is absolutely awful.  I hope that you get results quickly and can create a plan soon.  Good luck and hugs to you.

    I'm sorry if I missed anyone.

    A friend of mine from NY will be visiting Florida and I will get to see her on Sunday.  I can't wait.

     

  • Brightsocks
    Brightsocks Member Posts: 159
    edited January 2016

    My lumpectomy was on my left side but my right arm pit nodes are swollen. I have had a mammogram and they did not find anything yet I still have this issue. The doctor said she would check again during my operation yet never talked to me after surgery on Tuesday. I will see her in two weeks for a check. Does anyone else have this issue? My right arm pit node has been acting up for over two years and they never could find out why. It did seem to go up and down with my cycle.

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

    Icurrently have what feels like a bean which is probably a lymph node on my good side. Hopefully it's nothing.

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

    Before menopause, I would have the same issue with the lymph nodes behind my ears--they’d swell just before my period (I’d also get canker sores) and then go back to normal after the first day of flow.

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

    Molly I have a bean on my good side too. I had an Ultrasound last summer and there wasn't excessive blood supply - can't think of the exact words - so they said it was normal

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

    Thank you, Marijen. I suspect that's the case with me

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

    When my next exam comes up in two months I'm going to ask them to check it again. Starting to get freaked out about recurrence. It's never over.

  • Jclc83
    Jclc83 Member Posts: 246
    edited January 2016

    MelC yes lol. I've been on Taxotere and Cytotoxan Since the beginning. Followed by Neulasta every round. Three week schedule. I will have six rounds altogether One more to go! I don't know which of my SE's are from which drug. But I've been told that Taxotere stays in the body longer which is why the effects are cumulative You don't get rid of it all before you get more Fun!

    All of you look great! No pics here I look like a Chia Pet that was electrocuted. Yikes

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

    JCLC, LOL - an electrocuted Chia pet? What an image. I nearly laughed my oatmeal onto my laptop :)

    HUGS!

  • Peachy2
    Peachy2 Member Posts: 350
    edited January 2016

    Jclc83, I agree with Peggy, that is a hoot! And it's what I look like when I get out of the shower too. Wishing my body would divert its hair growing energy from my legs, and toes, to my head. :)

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

    Molly- so sorry you are having to be worried about that. Are you having it checked? Please keep us posted. The extra worrying is just part of it, I guess, but it stinks!

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

    I am stroking the random hairs on my left cheek right now, thinking that it will be nice to say goodbye to them.

  • Gemma12
    Gemma12 Member Posts: 137
    edited January 2016

    Jill - I wanted to tell you how cute you look in the pink wig. I'm sure you'll look good whatever way you choose to go. You have beautiful eyes! :) I'd like to say bye bye to my chin hair as well... maybe as well as being strong ER+/PR+ I also have a fair bit of testosterone, because they've there since I turned 30! ;)

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

    Thank you


    I wonder that too! I am only 42, but I have some random cheek and chin hairs and have for a while. When the nurse was showing me on my stomach where to do my Neulasta shot, I made her promise me I would lose those hairs too!

  • MLP3
    MLP3 Member Posts: 534
    edited January 2016

    Quite a busy chat room ladies!! I've been busy too with tests every day and 3 more days next week back to back. I'm exhausted! Had first set of appts with 3 docs wed, genetic testing Thursday and chest/abdomen CT Scan yesterday. Monday is chest/breast MRI, Tuesday second opinion in Boston at Dana Farber, Wednesday bone scans in am and ENT in pm. My LX and SNB is scheduled for Feb 8, so I'm looking forward to some rest in between.

    Sloan- How are you so pretty and radiant? Keep up the great work! You mentioned chemo with grade 3 IDC... Is that more often than not?

    LovestoFly- I love the pics of the wigs! The long, wavy brown looked great on you;)

    Amaree- I had genetic counciling two days ago and I'm on the cusp of "young age" at 48(45 is the actual number). Even though my maternal grandmother had breast cancer at 50, they are more concerned with my fathers side with his brother that died of a brain tumor st 16 and his grandmother of stomach cancer at 37. My second cousin was 38 with lymphoma and just kicked it's butt. So, what I learned is that the younger you are, the more the genetic testing makes sense, even with no family history.

    They are testing me for the BRCA 1&2 and another 5 genes that are responsible for other types of cancers that are also associated with breast. Then, they also included a panel that "casts the net out even further".

    My bs, med onc and rad onc want to wait for bx and snb until the first set of genetic testing comes back. They round table agree that if my first set tests come back negative, we stick with lx and snb. If positive, bilateral mx. Those results come back in 10-14 days. Personally, I'm taking the gamble withtwo surgeries if the further testing comes back positive after the first tests negative. Believe me... My head is spinning too!

    I just want this lump out ASAP as they found one early suspicious node. And I'm so curious about the second opinion at Dana Farber.

  • Sloan15
    Sloan15 Member Posts: 896
    edited January 2016

    Molly and Brightsocks - I had a bean-sized lump on a lymph node at the base of my skull during chemo that freaked me out. It lasted for a month or two then went down with an antibiotic. The docs were not concerned saying it was probably an immune response somewhere in my body. Not the same spot as you ladies, but I wanted to share a possibility, too. Hugs to you both.

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

    Electrocuted Chia pet, great mental picture lol

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

    MLP3, you must be awfully tired of being poked, stabbed, prodded, not moving and being a victim of Dracula. But you will know a whole lot more about your body than you did a month ago. Hope it all is helpful and reassuring. If nothing else, you'll be able to make a very informed decision on what to do next. Two surgeries is a pretty good idea. Go with the Lx. You can always do an Mx later if called for. I think most of the gals who have had to go on and get an Mx after an Lx were glad that was the way they went even though it was more surgery (something none of us is thrilled about except it gets the cancer out!). Good luck. And having a date is nice.

    HUGS!

  • MLP3
    MLP3 Member Posts: 534
    edited January 2016

    Thanks Peggy! Glad my good vein gets a rest for 2 days;)

    I saw my cbc on my patient portal and my white blood cells counts are declining slowly but surely when I look at my historical chart. I know cancer patients have low wbc... But I'm treading in low % EOS... Anyone have this quickly after dx? My concern is picking up colds, flu, infection and getting sick going into this. I'm hoping my vegan diet and immunity juicing keeps up with all of this as it has.

    Seeing that online gave me a bit of a moral kick in the pants last night and fir the first time I felt scared.

  • Sloan15
    Sloan15 Member Posts: 896
    edited January 2016

    MLP - Yes, my WBC count went down to "1" three days after my first chemo, and I started crying because I thought I wasn't handling the chemo or something. So, I had Neulasta shots each time after chemo and was REALLY diligent about washing my hands and staying away from crowds. I was fine and made it through all the back-to-school sicknesses without getting sick myself.

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

    MLP3, I haven't gotten into vegan diets, juicing etc. I did find that over the past decade I eat far less beef and fewer fried foods just because they don't agree with my tummy. More fish and chicken. But that is certainly an individual choice. And I'm sure it works for you! I hope you have gotten your flu shot. It's so hard to avoid all the winter bugs. I did hear that this warm winter has delayed the start of flu season. That's good.

    HUGS!!

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