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mtmom
mtmom Member Posts: 59

Hi All!

I've been on here quite a bit the last few days. I was desperately in need of help for radiation burns and found this forum. Sent out the bat-signal and got the help I needed! Thank you so much. So, I've been reading old posts and new posts and there seems to be a ton of support.

I was diagnosed with stage 2 breast cancer (IDC) in March. I was sure it wasn't breast cancer so when I was scheduled for a mammogram I figured I would wait to tell my husband I went. And if I needed a biopsy I would take him for that. Imagine my surprise when I have the mammogram, ultrasound, biopsy, and diagnosis all in the same visit! Run over by a truck!! We saw the surgeon and then went to the oncologist and decided to have chemo first and go for a lumpectomy. We ended chemo a few weeks short because I got neuropathy from the Taxol (I have type 1 diabetes and neuropathy is common; we stopped chemo so hopefully it isn't permanent). Just before surgery the surgeon talked to me again about a modified radical mastectomy rather than the lumpectomy. Due to alot of different factors, I agreed. God was so good! When the pathology came back I didn't have clear margins and had I done the lumpectomy I would have had to go back for a second surgery. Even after chemo I still had a lump, 5 positive lymph nodes, and cancer cells in the lymph vessels. I just finished 33 radiation treatments.

Thank you for letting me share. This is a strange journey to be on and it's good to have somewhere to go.

Blessings,

~Mtmom

Comments

  • New Flower
    New Flower Member Posts: 4,294
    Welcome to CSN

    Welcome to the family

    thank you for sharing your story 

    we all need support and care, this site is a a great place to meet and help each other

  • rutzetta
    rutzetta Member Posts: 174
    Welcome

    Glad you found us! During the uncertain days the advice you will get frlaid his site is what you will find helpful. I couldn't agree more, "it's good to have somewhere to go". 

     

    Constance

  • hope67
    hope67 Member Posts: 181
    Welcome

    Welcome, I am sorry you had to come here. It seems to me that you are doing fine. We have something in common, I was also diagnosed in March. You are so right, this is a strange journey and sometimes a very hard one and it helps to get as much support as you can.

    Take care, Carmen

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    Hi and welcome to the CNS

    Hi and welcome to the CNS breast cancer boards. I am sorry you are here, but it is a good place to come to.

    Did you discuss your rad burns with your rads doctor? I have heard there are creams you can use to help that.

    As far as the neuropathy, are you on gabapentin (Neurontin),Lyrica or something similar to them? I have neuropathy from nerves being nicked during breast cancer surgery.

    I hope your neuropathy heals soon.

  • mtmom
    mtmom Member Posts: 59

    Hi and welcome to the CNS

    Hi and welcome to the CNS breast cancer boards. I am sorry you are here, but it is a good place to come to.

    Did you discuss your rad burns with your rads doctor? I have heard there are creams you can use to help that.

    As far as the neuropathy, are you on gabapentin (Neurontin),Lyrica or something similar to them? I have neuropathy from nerves being nicked during breast cancer surgery.

    I hope your neuropathy heals soon.

    Thanks for asking

    Thank you for asking about the burns and neuropathy. My rad doctor said to use aquaphor and get air to it every day. But, using the Domeboro powder suggested by Rague (thank you :) ) has really helped with healing. And for the neuropathy I've been using a naturopathic doctor and the supplements I'm on are helping.

    It has amazed me, tho, that going into this I thought "okay...eight months and then life will be normal again." And while I was in my chemo fog, someone moved 'normal' on me!! My hubby says it is what it is and we work with that and we are thankful each and every day for God's mercies. When I was anticipating radiation I was praying for someone to come along who had had radiation since the ladies I had met up to that point only had chemo. Next day, in line at Walmart, a lady asks if I'm on chemo (no hair) and turns out she had finished radiation a few months earlier! I was able to ask alot of questions and she had pictures...she didn't have any blisters just a sunburn. And then I found this forum right when I needed it. :)

    Blessings,

    ~Mtmom

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    mtmom said:

    Thanks for asking

    Thank you for asking about the burns and neuropathy. My rad doctor said to use aquaphor and get air to it every day. But, using the Domeboro powder suggested by Rague (thank you :) ) has really helped with healing. And for the neuropathy I've been using a naturopathic doctor and the supplements I'm on are helping.

    It has amazed me, tho, that going into this I thought "okay...eight months and then life will be normal again." And while I was in my chemo fog, someone moved 'normal' on me!! My hubby says it is what it is and we work with that and we are thankful each and every day for God's mercies. When I was anticipating radiation I was praying for someone to come along who had had radiation since the ladies I had met up to that point only had chemo. Next day, in line at Walmart, a lady asks if I'm on chemo (no hair) and turns out she had finished radiation a few months earlier! I was able to ask alot of questions and she had pictures...she didn't have any blisters just a sunburn. And then I found this forum right when I needed it. :)

    Blessings,

    ~Mtmom

    I think most of find out that

    I think most of find out that after treatments we are never the same as we used to be. We call it our new normal for each one of us.

    I am glad you are getting help and support here!

  • sandra4611
    sandra4611 Member Posts: 121
    Glad you are here

    Welcome,

    Oh my, you've been through so much. It makes all the difference to find someone who has been through it too, doesn't it? We've all gotten support here and while we certainly aren't medical experts, we ARE experts in living with our own cancer. We've all had to find our "new normal."

  • Kate65
    Kate65 Member Posts: 1
    I'm scared

    I caught a bus to a medical appoinment that has now changed my life.

    im scared, I have only two children in this world, I have never felt so alone

    i don't even know what to type, I feel sick, but I realise suddenly that I didn't know

    what cancer really meant, I have the rarest and most aggressive type in the breast

    the doctor could only tell me....it doesn't look good, no chemo. Maybe radiation, but that depends on my surgery

    tomorrow. I just want to go to sleep and wake up like this is all a dream.

    help me :(

  • gagee
    gagee Member Posts: 332
    Kate65 said:

    I'm scared

    I caught a bus to a medical appoinment that has now changed my life.

    im scared, I have only two children in this world, I have never felt so alone

    i don't even know what to type, I feel sick, but I realise suddenly that I didn't know

    what cancer really meant, I have the rarest and most aggressive type in the breast

    the doctor could only tell me....it doesn't look good, no chemo. Maybe radiation, but that depends on my surgery

    tomorrow. I just want to go to sleep and wake up like this is all a dream.

    help me :(

    Welcome to this wonderful site...

    You will see the more you need answers you will find a lot of there on here. The ladies here are very helpful. Knowing your not alone helped me the most. Wish I knew more to say to comfort you.  I believe God is there for me and hope if you have that belief you will feel his help for you. We are all different stages and react different to meds and treatments but I promise you will find kind words here to help you.  

    Good luck with your surgery. 

    God Bless You and be with You,

    Diana

  • gagee
    gagee Member Posts: 332
    This is a great place for comfort and info...

    Welcome to you and sorry you had to be here. Just know they are many here with help and info for you. I think you will be happy to be here. Wish I could help you more.  I don't come on as much any more. I try to at least read the articles here once a week. 

    My prayers are with You,

    Diana

  • camul
    camul Member Posts: 2,537
    I am so glad you found s!
    ayou are so right. Being diiagnosed with cancer is a very scary place to be and everyhing seems to come at you so fast. I felt as though there were so many decisions to be made so quickly that my head was constantly spinning. It does get better as you get further away from active treatments.
    I believe that everything happens for a reason... thank God you went to the doctor when you did, and that the doctor was aggressive in doing all the tests in one day. It saved you days to weeks of waiting, which is the absolute worse, ank thankfully got it before it was too late.
    I am glad younarenhere.
    Hugs and prayers,
    CAROL
  • sandra4611
    sandra4611 Member Posts: 121
    Kate65 said:

    I'm scared

    I caught a bus to a medical appoinment that has now changed my life.

    im scared, I have only two children in this world, I have never felt so alone

    i don't even know what to type, I feel sick, but I realise suddenly that I didn't know

    what cancer really meant, I have the rarest and most aggressive type in the breast

    the doctor could only tell me....it doesn't look good, no chemo. Maybe radiation, but that depends on my surgery

    tomorrow. I just want to go to sleep and wake up like this is all a dream.

    help me :(

    Kate 65

    Kate, what was your diagnosis? You said it was an aggressive type. What kind exactly? Please share details. Did they do a biopsy?

  • 2ndxyvonne
    2ndxyvonne Member Posts: 41
    IDC Recurrence after 4 years and 10 months

    Almost made the 5 year mark!  Surgeon and oncologist give different advice.  Surgeon says just radiation, he got most of the tumor from my chest wall, just thinks there may be some cancer cells left behind.  Oncologist says chemo every 2-3 weeks for 5-6 months, then rads.  I had Stage 1B IDC in 2008, had a modified radical, with 1 out of 9 lymph nodes with micro cancer cells.Thought after the surgery since I did not have a breast there I'd be fine.  Dummy me, I still have the chest wall.  Anyway, have scans this Thursday, CT and bone, then I will decide about treatment.  Any suggestions? ER+PR- Her2 is positive.  Not staged yet till after testing.

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Just wanted to say welcome

    Just wanted to say welcome aboard.  I know this is one message board no one wants to join, but I am glad that you are here and happy you have found help.  I was lucky with radiation and just had a mild sunburn, but I have that olive type of complexion that doesn't usually burn.

    Sending healing hugs and prayers.  Hope you are feeling better soon!

  • 2ndxyvonne
    2ndxyvonne Member Posts: 41

    Just wanted to say welcome

    Just wanted to say welcome aboard.  I know this is one message board no one wants to join, but I am glad that you are here and happy you have found help.  I was lucky with radiation and just had a mild sunburn, but I have that olive type of complexion that doesn't usually burn.

    Sending healing hugs and prayers.  Hope you are feeling better soon!

    Thank you for hugs and prayers

    I had surgery Oct. 17, am still sore but doing much better.  I have a great surgeon who I really have confidence in.  Not sure about oncologist yet since I have only seen her once.  Will give it time to form a definite opinion.  I used to go on a different message board when I was dx in 2008, but it is no longer on line, I guess,

    since I can't seem to find it.  And, thank you, it does help to have others to talk to who can relate.  My family is not too keen about talking about any cancer, I lost my husband to lung cancer in 2011.  So, cancer is a "forbidden" topic. 

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    Hello and welcome..
     
    Denise

    Hello and welcome..

     

    Denise

  • Dwwilburn
    Dwwilburn Member Posts: 19
    Kate65 said:

    I'm scared

    I caught a bus to a medical appoinment that has now changed my life.

    im scared, I have only two children in this world, I have never felt so alone

    i don't even know what to type, I feel sick, but I realise suddenly that I didn't know

    what cancer really meant, I have the rarest and most aggressive type in the breast

    the doctor could only tell me....it doesn't look good, no chemo. Maybe radiation, but that depends on my surgery

    tomorrow. I just want to go to sleep and wake up like this is all a dream.

    help me :(

    Here

    Cancer is a lonely ride. I was diagnosed in Oct 2010. I know that sick feeling and you do wish to wake up from that bad dream. The word surreal fit well. I remember it being so hard waking up each morning and then remembering that I have cancer. Please post what you have learned about your cancer and the treatment options. People with your particular type of cancer might can offer some insight. Mine wasn't agressive. So, please update!

     

  • GMcD
    GMcD Member Posts: 134

    Hello and welcome..
     
    Denise

    Hello and welcome..

     

    Denise

    Hi.  You will be so glad for

    Hi.  You will be so glad for this group of wonderful folks as you go through your treatment journey.  It's been almost 4 yrs since my dx and I will tell you there is no question too small to ask here.  What I loved most during the nights I couldn't sleep for various reasons I could come here and there was always someone on.  Best Wishes.

  • 2ndxyvonne
    2ndxyvonne Member Posts: 41
    GMcD said:

    Hi.  You will be so glad for

    Hi.  You will be so glad for this group of wonderful folks as you go through your treatment journey.  It's been almost 4 yrs since my dx and I will tell you there is no question too small to ask here.  What I loved most during the nights I couldn't sleep for various reasons I could come here and there was always someone on.  Best Wishes.

    Have appt with onco in the morning, guess I'll find out results of PET scan I had done Friday.  I keep trying to stay in a prayerful mood, but I slip.  Guess it's normal.  I just know a lot of people say when you have a recurrence it's worst than the first time.  I am trying to stay strong , but I guess I am only human.