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  • Lou53
    Lou53 Member Posts: 81
    edited April 2016

    Trisha Anne, so sorry to hear that. It's a tough call to make. I have heard keeping the port on for years but I just asked my Onco this and he said leave it for a minimum of 6 months if I really want it out but he would prefer much longer.I have thin skin and small veins so I really didn't have a choice.

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  • 6feetover
    6feetover Member Posts: 320
    edited April 2016

    My port was removed at the time of my lumpectomy surgery in December...

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited April 2016

    I was told I had to keep my port minimum of 2 years since I'm IBC. Counting from time it was placed.


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  • LillieRose
    LillieRose Member Posts: 112
    edited April 2016

    hi all,

    I hope everyone is well! I don't post much because I'm "trying" to be as normal as possible.. But I lurk and check in on you ladies (and husbands.)

    Yesterday was my 1 year from diagnoses... I wasn't sure when to count 1 year but it seems to be dx date... I did chemo first so it couldn't be from surgery date?! Anyway... 1 year ago yesterday I got that awful phone call... 2 weeks later I was on chemo. I'll never forget any of it. I was a healthy active 30 year old new mom (Lilian my baby was just 4 months old) We had no family history... It was so shocking. I remember thinking the chemo would kill me if the cancer didn't.... I was so scared because it was so unknown....

    Here I am tho! With my short extremely Curley dark hair... At work. My baby is walking and talking... I'm still scared. Everyday I have to convince myself the cancer is gone but life does go on and I do feel almost normal at this point. I'm different then a lot of you in the way that I don't go in for aches and pains... My onco was very real with me saying they couldn't do much if it didcome back so I try to enjoy each day and wish all my pains away. I'd rather live a normal life as long as possible without knowing... May sounds crazy but it works for me.

    I hope this gives the newbies some hope... It's only a year but for me I feel so grateful to be alive and seeing my little girls grow.

    Best wishes to you all 💛 Stay strong. Stay brave, and never lose hope :) if we have hope, we have everything!

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2016

    my port was removed 3 wks after chemo. I needed it removed to mentally heal.

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2016

    Lillierose, so happy for your one year anniversary! So happy for you and your family. Enjoy life! I can see that you are.

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited April 2016

    Ladies & Gents,

    No METS! But really bad arthritis. Last scan was approx. 10 months ago & it a lot worse now. I'll take that. Before not in spine. Now is mostly mid back. But YEA!!!!!

    Thank you all for the support

    Marsha

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  • greenae
    greenae Member Posts: 540
    edited April 2016

    Marsha

    I AM SO HAPPY TO HEAR YOU ARE ALL CLEAR! Take care of that arthritis, exercise will keep us going.

    Hugs!

    Arlene

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2016

    Marsha, - I am sorry about the arthritis, but so glad that its not mets!! Now you can breathe easier!

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  • 6feetover
    6feetover Member Posts: 320
    edited April 2016

    Marsha: Excellent news! *BIG HUGS* for crappy arthritis! ;)

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited April 2016

    Marsha, I'm so thankful it's not mets!! Thanks for updating us so quick!

    Ladies, and men too, I hope you don't mind me posting this here but I would really appreciate prayers for my family. My mom went in for a yearly physical and they did an EKG since she had never had one. Her doc said it looks like she had a heart attack at some point! She has had issues with reflux/heartburn, so perhaps one of those episodes was actually her heart. I dunno. She sees a cardiologist April 13th. Guys, I'm so scared! I'm more scared for her than I was for myself when I was diagnosed with cancer. I will be 40 this month but I'll always need my momma! She seems ok but she's good at hiding things from us, me especially because I worry so much. I know this isn't cancer related and I'm sorry! We could just use some prayers please!

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  • LillieRose
    LillieRose Member Posts: 112
    edited April 2016

    thank you meadow :)

    Congrats on the scan Marsha!

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  • shiny
    shiny Member Posts: 892
    edited April 2016

    Marsha, so glad for your ' mets-less ' scan results. I hear you re bad arthritis, I have had several bone met scares with bone scans and mri come back negative for mets but Arthritis yes. Sorry yours is so bad.. Always think how things change once in bc club, and what a ' good news results' is to us, like your arthritis not being mets. If helpful, i got given diclofenac for joint pain and it worked a charm ..unfortunately, i coudnt keep taking it due to palpitations it was giving me. Hope it or another drug gives you releif soon, now you know what you are treating.

    Luvmyd.. Sending your mum, and you doubly calming vibes and prayers right now. It's good docs found out for her. Now they can assist and hopefully prevent any new attack. It's good/ lucky they found out now not after a worse attack. Deep breaths and look on this on that positive note if you can. Docs can be preventing in their work now.

    Shiny

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2016

    Luvmydobies .... I am sending prayers and good vibes to your mom. Try to relax (not easy) and think positive. They are doing unbelievable things now for the heart. Be strong for your mom. Eventually the tables turn and she needs your strength now. I will be thinking of you and hoping for the best.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2016

    Marsha...did you ever think you'd be happy with an arthritis diagnosis!!! Good news even though it can be challenging to handle. Water exercise works wonders

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  • greenae
    greenae Member Posts: 540
    edited April 2016

    luvmydobies

    Thinking of u and ur mom. She will be fine! Caught early, she can make some lifestyle changes and make sure this doesn't mess with her!

    Big hugs!

    Arlene

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  • SA8PG
    SA8PG Member Posts: 371
    edited April 2016

    Lillierose congrats on the 1 year milestone. So happy to hear and to see that you are learning to "live" especially with all the memories ahead with your little one. Xoxo

    Marsha so happy no Mets and I pray your arthritis will be as pain free as possible. Xoxo

    Luv. You know I will be praying for your dear momma. She is blessed to have you and that you will rally around here with love, support & wisdom. Xoxo

    Have a great weekend ladies. My stage 2 from the Diepis scheduled for August. Hard to believe it will be 2 years for me in July. :)

    Love

    G

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited April 2016

    meadow I had my port removed 2weeks pfc in December. My mo said it was ok. Like jenjen I also needed it gone to mentally heal.

    Marsha good news on no mets but sucks about arthritis. Hugs

    LillieRose congrats on 1 year. That's awesome. I am approaching my 1year since dx next month. Hard to believe it's been 1year.

    Luvmydobies I will def pray for your momma.

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited April 2016

    Thank you all for the prayers and good thoughts! They'll definitely help! I'm not panicky or anything in front of my mom because I know that will make it worse for her. Trying to stay strong for her, so she doesn't worry about me stressing over this. It's time to NOT worry about me though and I'm reminding myself of that. I just wish I wasn't 1600 miles away from her! Thank God she has my dad there with her, and my brother and sister are close to home at least!

    Hope everyone has a nice, relaxing weekend! Thanks again for the prayers for my mom!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2016

    Luv, - sending BE WELL wishes to your Mom (and to everyone here, too, of course!). Cardiology is an amazing field these days. I am sure she is being well cared for and having your Dad and siblings there should give you peace of mind, too!


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  • Anniekay80
    Anniekay80 Member Posts: 127
    edited April 2016

    Luvmydobies

    My father had a "silent" heart attack too 30 years ago. He is still going strong now at age 84. The ladies are all correct....cardiology has come a long way. My husband also had a heart attack sometime during the first week of July last year.....he swore it was just heartburn and refused to go to the doctor until I set my kids on him. He saw our family doctor and was told to go home and get me (our doctor knows us very well). From there we were to go to the ER for a cardiologist to "go over the EKG" and our doctor would call ahead. My husband fell for this story, but as our doctor knew I would, I heard "direct admit". Long story from there, but he got the best of treatment and finished all his physical therapy just in time for my diagnosis. He is pretty darn healthy considering the stress my diagnosis put on him and is a wonderful caregiver to me.

    So hang in there cause I've been where you are with first my dad and then my husband. Prayer is the only thing that got me through. Since I know God carried me through all the trials we've had these past 10 months....I keep repeating "one set of footprints" .........my way of saying it's not my strength getting me through all this, but God's strength.

    Sending prayers your way!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited April 2016

    Anniekay, thanks for sharing your experiences! Glad your hubby is doing well. Thanks so much for praying too. I agree that it's God carrying us as well. XOXO!!

    Another, thank you so much for the well wishes too!

    It means a lot to have you ladies praying! God bless all of you! XOXO!!

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited April 2016

    Thanks for all your replies lovely ladies.

    I had a scan today to see if my port has a problem, and yes it's developed a leak. So can't be used anymore. I only have four Taxols left, so will continue and use the veins in my arms and hope they hold up. After chemo I'll have my port removed and if I need it again in the years to come, then I'll just have another one put in then. Hopefully I'll never need another one.

    It's been emotionally exhausting these past few days - not helped by the fact that I'm physically exhausted as well. So long as my veins hold up ok, I only need to get through the next four weeks, and then onwards and upwards.

    Trish

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2016

    Trisha-Anne....sorry about your port. I have lousy veins but was fearfult to get a port. I had a consultation with the Chemo nurse before treatment started. Her advise was to begin drinking water the day before and drink LOTS. I even drink through the night if I happen to get up. I drink until they come with the needles. So far so good. It was good advice. Good luck to you

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  • Twaz
    Twaz Member Posts: 50
    edited April 2016

    New here. Sorry I haven't read through the 1010 pages.

    Just got the dreaded call about an hour ago. Lots of tears, calls to my parents and husband. Scared, but don't feel alone. I am triple negative. Glad to have found you all.

    I'm 43, married, two kids (ages 8 & 11).

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  • KSteve
    KSteve Member Posts: 486
    edited April 2016

    Twaz - Welcome! You are without a doubt in the worst part of the entire journey. This is the scariest of times. You will feel much more in control once you get a treatment plan. As you'll see from my info below, I am here 5-1/2 years later and am physically in better shape then I was before. I was diagnosed at 44 and my tumor was large. Just take it one day at a time. And come here often for support and help with any questions that you have along the way. We're all here for you!! You can do this.

    Hugs,

    Kathy

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2016

    Trisha, - sorry about your port, - but I think you will feel a lot better with it gone! Mine was in an awkward spot, and so uncomfortable even though it worked.

    Twaz, - welcome to our group. It is the best place to be when we have this journey to go on!

    Hugs to you both, and everyone else here, too!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2016

    Just read very encouraging article for those of us getting TC vs ACT. Link below.

    http://meetinglibrary.asco.org/content/151638-156

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2016

    Twaz...So sorry you are here, but I welcome you to this incredible group of women. Hearing a TN diagnosis is very scary. Have yourself a good cry and then lift your head up and think positive thoughts. Read through the pages here and look towards a bright future with your family. There are so many women who were diagnosed TN and are here years later living great lives. One good thing for us is that right now TN is a hot research topic. You will feel more in control once you have a treatment plan. I'm right in the middle of my treatment and feel very much supported by my breast cancer.org friends. Wouldn't be able to do it without them. We're all here supporting you and sending good vibes. Be strong. It will be OK

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  • ALHusband
    ALHusband Member Posts: 344
    edited April 2016

    LillieRose I have wondered over and over about which anniversary to count with my wife's BC. You can find people that will tell you any of the three. From Dx, From Chemo or from Surgery. I guess the major studies all use from Dx. But because the answers are all over the board...my wife and I have decided to celebrate ALL THREE. Congrats on your 1 year cancerversary. May there be many many many more!

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