New and scared

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I am new here. Diagnosed with stage 3 breast cancer on October 22nd and had a double mastectomy on November 19th. I've been to lots of appointments and the more I go the more scared I am. I am waiting for a call to schedule a pet/ct scan to see if my cancer has spread anywhere else & I am supposed to start chemo around Christmas. 

I know i am not alone but it really feels like it somwtimes. I'd love to hear from others who have gone or are going through this as well.

I have googled everything I can to see as many success stories as possible which helps me get through the night. 

I keep thinking it's has to be a bad dream & I am going to wake up soon~

Thanks & best wishes to everyone 

Lori

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    welcome to our Sisterhood ... not a place

    many 'want' to be a part of ..  breast cancer is a topic many do not discuss until the month of October comes around - however, there are many of us that deal with a breast cancer dignosis = the other 11 months of each and every Year.

    If at all possible - keep your wits about you.  Request a one on one with your Oncologist = ask for research data, clinical trials he/she has been involved with =

    Maybe you can visit chemo center before hand =  or Radiation Center

    Is there a previous patient that you can speak with =

    Support Center = Groups associated with Oncology Center

    Record your visits with your oncolgist, and surgeons. Keep a note pad available so you can jot down questions, and concerns. 

     

    HOW to prepare yourself, what to expect will change --

    Vicki Sam

  • lintx
    lintx Member Posts: 697
    Options
    VickiSam said:

    welcome to our Sisterhood ... not a place

    many 'want' to be a part of ..  breast cancer is a topic many do not discuss until the month of October comes around - however, there are many of us that deal with a breast cancer dignosis = the other 11 months of each and every Year.

    If at all possible - keep your wits about you.  Request a one on one with your Oncologist = ask for research data, clinical trials he/she has been involved with =

    Maybe you can visit chemo center before hand =  or Radiation Center

    Is there a previous patient that you can speak with =

    Support Center = Groups associated with Oncology Center

    Record your visits with your oncolgist, and surgeons. Keep a note pad available so you can jot down questions, and concerns. 

     

    HOW to prepare yourself, what to expect will change --

    Vicki Sam

    Hi Lori

    My case wasn't like yours, but the whole ordeal just petrified me.  I want you to know that you aren't alone here, and we'll answer any question.  There are so many who come back over and over with positive and uplifting stories.  There will be life after treatment.  Please hold that thought.  Hugs, Linda

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
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    January 2012 I was told I had

    January 2012 I was told I had cancer -- long story short . . . the left was obviously problematic and the right was starting to show signs of cancer.  So, I chose a double mastectomy, rather than do something more conservative on the right side.  I thought that in the "big picture" that made more sense, especially for peace of mind.

    What would be the next course of action would depend on what the pathology reports showed.  I ended up being tagged a IIIA.  Because a lymphnode was affected, the recommendation was that I add chemo to the plan.  After that I would do radiation therapy.  I am currently on hormonal therapy.  I chose to tackle this aggressively so that it would only be this one time of having to deal with cancer.

    My chemo was delayed a week because some small spots showed up on a CT scan.  The DRs had a quick consultation and decided to start chemo the following week.  The spots were too small to show up on any other scan (PET).  They would just monitor those.  I did chemo (8 infusions ever other week).  I finished radiation therapy (30+ sessions).  My last appointment for that was the end of September 2012.

    Twice I had CAT scans to check on those spots.  The first one showed no growth with those spots.  So, the DRs thought it may just have been residuals from my surgery BUT wanted to check one more time before giving me the green light to get my port out.  That last CAT scan showed nothing, not even the spots.

    Today, people who do not know me well have no idea I have done battle with cancer. 

    Hope this helps.

  • Just_lori6
    Just_lori6 Member Posts: 76
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    VickiSam said:

    welcome to our Sisterhood ... not a place

    many 'want' to be a part of ..  breast cancer is a topic many do not discuss until the month of October comes around - however, there are many of us that deal with a breast cancer dignosis = the other 11 months of each and every Year.

    If at all possible - keep your wits about you.  Request a one on one with your Oncologist = ask for research data, clinical trials he/she has been involved with =

    Maybe you can visit chemo center before hand =  or Radiation Center

    Is there a previous patient that you can speak with =

    Support Center = Groups associated with Oncology Center

    Record your visits with your oncolgist, and surgeons. Keep a note pad available so you can jot down questions, and concerns. 

     

    HOW to prepare yourself, what to expect will change --

    Vicki Sam

    8)

    Thank you Vicki Sam,

    I appreciate the advice so much! I have looked up some support groups in my area. I am hoping to get the courage to go into one next week.

    I have been to the chemo center just a couple days ago which went fairly good.

    But I did go to the radiation facility prior to that and it freaked me out. For some reason I thought the chemo place would be worse. I kept hearing the receptionist answering the phone "Cancer Center please hold" & there were so many people there that looked sick and acted either sad or ill. I couldn't help but start to cry. I'm a girl who doesn't cry in front of anyone but I just couldn't help.it.

    I guess it will get better as I go... it's just hard to believe. I've done the cancer walks many times with friends just to support the cause, never thought some day it would be for me. 

    Thank you~

    Lori

  • Just_lori6
    Just_lori6 Member Posts: 76
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    lintx said:

    Hi Lori

    My case wasn't like yours, but the whole ordeal just petrified me.  I want you to know that you aren't alone here, and we'll answer any question.  There are so many who come back over and over with positive and uplifting stories.  There will be life after treatment.  Please hold that thought.  Hugs, Linda

    Hi Linda,
    Thank you~ I'm

    Hi Linda,

    Thank you~ I'm going to kep in my mind "that there will be life after treatment"

    What great advice! I hadn't heard of this site until my chemo consultation so I heard I have cancer, had a double mastectomy & started reconstruction along with so many other tests, appointments and tears.

    This site is so helpful & it should be one of the first suggestions given when your told you have cancer. 

    I have 3 more appointments before starting chemo & I'm sure I will be filled with questions and worry.

    I cant Thank you and everyone enough for your help!

    ♡Lori 

  • christald21
    christald21 Member Posts: 55
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    Hi Linda,
    Thank you~ I'm

    Hi Linda,

    Thank you~ I'm going to kep in my mind "that there will be life after treatment"

    What great advice! I hadn't heard of this site until my chemo consultation so I heard I have cancer, had a double mastectomy & started reconstruction along with so many other tests, appointments and tears.

    This site is so helpful & it should be one of the first suggestions given when your told you have cancer. 

    I have 3 more appointments before starting chemo & I'm sure I will be filled with questions and worry.

    I cant Thank you and everyone enough for your help!

    ♡Lori 

    Hi Linda

    Mine was some what similiar.  I was diagnosed In May with stage3A.  I had one tumor 2.5cm with one lymph node.  I can tell you that you are not alone in how you feel scared.  It is so scary.  I think the more information you can obtain will help you better understand.  This website is really good too.  also you can go to Breastcancer.org.  very good information on there too. 

    My treatment plan was different.  i had 6 rounds of chemo, once every 3 weeks .  I will tell you this, Linda, Life still goes on even through your treatments.  There are good days and not so good days.  And after your first couple treatments you will know what to expect.  I took time off work. I was lucky enough to take a LOA at my job.  Since i work in a casino, i figured i didn't want to catch anything since my immune system is jeopardized.  After chemo, i then had double masectomy with beginning reconstruction.  This is where i am today.  It has been 10 days since my big surgery.  Unfortunely they still found cancer in what they took out, but it was very little.  So i have to go through radiation.  At first, all my old feelings came back from the first day i heard i had cancer.  But then, i spoke to my surgeons nurse, and it is good to know they got everything out, and radiation is just another way to make sure my chances of cancer coming back will be hardly any at all!  So,  you will see as you go about your treatments, that you will want to do anything you possibly can to make sure it doesn't come back!

    I also know how you feel about all the tests they put you through.  It is nerve racking.  I couldn't have a cat scan because my stupid insurance would not appove it, so I had to go about a harder way to have tests done to make sure it wasn't anywhere else in my body.  Thank goodness it all came out clean!

    Good luck to you my dear,  stay in touch and let us know how you are doing

  • Just_lori6
    Just_lori6 Member Posts: 76
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    January 2012 I was told I had

    January 2012 I was told I had cancer -- long story short . . . the left was obviously problematic and the right was starting to show signs of cancer.  So, I chose a double mastectomy, rather than do something more conservative on the right side.  I thought that in the "big picture" that made more sense, especially for peace of mind.

    What would be the next course of action would depend on what the pathology reports showed.  I ended up being tagged a IIIA.  Because a lymphnode was affected, the recommendation was that I add chemo to the plan.  After that I would do radiation therapy.  I am currently on hormonal therapy.  I chose to tackle this aggressively so that it would only be this one time of having to deal with cancer.

    My chemo was delayed a week because some small spots showed up on a CT scan.  The DRs had a quick consultation and decided to start chemo the following week.  The spots were too small to show up on any other scan (PET).  They would just monitor those.  I did chemo (8 infusions ever other week).  I finished radiation therapy (30+ sessions).  My last appointment for that was the end of September 2012.

    Twice I had CAT scans to check on those spots.  The first one showed no growth with those spots.  So, the DRs thought it may just have been residuals from my surgery BUT wanted to check one more time before giving me the green light to get my port out.  That last CAT scan showed nothing, not even the spots.

    Today, people who do not know me well have no idea I have done battle with cancer. 

    Hope this helps.

    8)

    Hi Desert girl,

    Yes! Your story does help! Thank you for sharing with me.

    Each story I hear is different and the same. Not sure that makes sense 8)

    You are better now I hope? And done with treatments?

    I told one of the other girls that this site is so helpful. It should be one of the first things given to anyone who is told they have cancer. 

    Thank you for sharing, you have made me feel better 8)

    "Oh" I will be getting port put in next week. Do you recall if it hurt & if it was a major procedure? After all the surgeries not sure something that small would hurt at this point but I am getting sick of constantly hurting in one place or another. 

    Thanks again~

    Lori

  • Treecy1106
    Treecy1106 Member Posts: 144
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    Hi Lori

    Hi Lori,

    Glad you are reaching out....you know we are here....especially in the chatroom!!! STage 2A triple negative was a horror for me but guess what??? I am still here to talk about it and help others get through it.

    Is it easy getting a cancer diagnosis ..NO WAY....do I even think about it now?? NO WAY. Life is terminal ....and I would look around and say to myself....I do not see anyone else worried about dying so why am I?

    Treat cancer like a chronic illness. Get the medication you need (chemo and rads) and then move forward. You will be another success story.

    Keep the faith and start googling ways to keep your body alkaline.

    I took probiotics while on chemo and vitamin D3 and Bcomplex.

    Talk to your Doctor about it.

    Good luck...and keep that immune system up. XOXOX

    Patrice

  • Puffin2014
    Puffin2014 Member Posts: 531 Member
    Options

    8)

    Hi Desert girl,

    Yes! Your story does help! Thank you for sharing with me.

    Each story I hear is different and the same. Not sure that makes sense 8)

    You are better now I hope? And done with treatments?

    I told one of the other girls that this site is so helpful. It should be one of the first things given to anyone who is told they have cancer. 

    Thank you for sharing, you have made me feel better 8)

    "Oh" I will be getting port put in next week. Do you recall if it hurt & if it was a major procedure? After all the surgeries not sure something that small would hurt at this point but I am getting sick of constantly hurting in one place or another. 

    Thanks again~

    Lori

    port

    I had a port too, the area is all numbed up, no pain having it put in, it's an outpatient procedure and you go home a couple hours after. It's tender for a few days, I like to sleep on my stomach and couldn't lay on my port for awhile. It also helped to have a little pillow to cushion under the seat belt strap when I rode in the car for awhile.

    Make sure you get a prescription for the numbing cream for your port, it works great. You put a glob of cream on the skin over the port about 1 - 1 1/2 hours before they're going to poke the needle into the port to access it, tape a small square of plastic wrap over the glob to keep it in place and to protect your clothes. I never had a painful poke and I know many ladies who did without the cream.

  • Teach76
    Teach76 Member Posts: 354 Member
    Options

    8)

    Thank you Vicki Sam,

    I appreciate the advice so much! I have looked up some support groups in my area. I am hoping to get the courage to go into one next week.

    I have been to the chemo center just a couple days ago which went fairly good.

    But I did go to the radiation facility prior to that and it freaked me out. For some reason I thought the chemo place would be worse. I kept hearing the receptionist answering the phone "Cancer Center please hold" & there were so many people there that looked sick and acted either sad or ill. I couldn't help but start to cry. I'm a girl who doesn't cry in front of anyone but I just couldn't help.it.

    I guess it will get better as I go... it's just hard to believe. I've done the cancer walks many times with friends just to support the cause, never thought some day it would be for me. 

    Thank you~

    Lori

    Chemo for 4 months, now

    Chemo for 4 months, now waiting for surgery in Janiary.  I was glad to have chemo first while I was strong, and I know what you mean about the "view in the cancer care room."  There were times when I thought I should begin a karyoke session.  I kept wondering if I would become like that as my treatments progressed.  All I can suggest is that you be your joy filled self!   Caretakers can get frustrated and tired, so I think we need to take on the role of cheerleader for all involved.  It doesn't cost anything to smile and say HI, and for some people, that may be the only positive interaction they get on their bad day.  My husband likes flavored coffee creamer, so that would be his treat to bring for each infusion.

    attitude is our strongest ally or enemy.  You just keep that positive attitude, and you will see the smiles grow around you.  Even on a bad day, I never let on ( but I was sure to mention any symptoms so they could be documented).  Journaling works for some, deep prayer or meditation for others.  For me, prayer, music and comedy worked best!  People were always so surprised how I could find something funny in every situation or appointment.  Keep laughing!

    kathy

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    Options

    8)

    Hi Desert girl,

    Yes! Your story does help! Thank you for sharing with me.

    Each story I hear is different and the same. Not sure that makes sense 8)

    You are better now I hope? And done with treatments?

    I told one of the other girls that this site is so helpful. It should be one of the first things given to anyone who is told they have cancer. 

    Thank you for sharing, you have made me feel better 8)

    "Oh" I will be getting port put in next week. Do you recall if it hurt & if it was a major procedure? After all the surgeries not sure something that small would hurt at this point but I am getting sick of constantly hurting in one place or another. 

    Thanks again~

    Lori

    My port was put in at the

    My port was put in at the hospital by my surgeon.  I was put under for it.  It did not take long.  Before I was released from the hospital, the med people brought in a portable x-ray machine to be sure everything was right.  It was.  It really did not hurt, but it was weird to get used to having there -- just below my collarbone.  I could see the small bump from its being just under the skin.  I would say the pain is minimal, if there is any.  I do not recall.   Because I was still healing from my other surgery, I was sleeping in the recliner chair.  That probably was also a good thing, as I did not have problems sleeping because of discomfort. 

    I am doing well . . . still clear.  I now see my onc every six months instead of every three.  That started mid-2014.  My aches and pains now are mostly due to my age and my genetics. 

    Laughing

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    Options
    welcome...
     
    I used a journal

    welcome...

     

    I used a journal (never before) during my cancer-at the beginning I thought it was silly, but in hind sight-It was very helpful.

     

    Denise

  • jay_rogers
    jay_rogers Member Posts: 14
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    I diagnosed with breast

    I diagnosed with breast cancer  before a year ago. I decided to undergo a prophylactic double mastectomy. It's difficult to condense the emotional and physical tolls that a mastectomy brings. It's truly miraculous how much healing your body does. Mine surprised me. I won't claim to be back to 80% after my mastectomy.

  • Brbm51
    Brbm51 Member Posts: 2
    Options
    2015-12-10 I had a lumpectomy

    2015-12-10 I had a lumpectomy Nov 23  2015 because it was stadge1.  One sentinel node positive so have an apt. with oncologist Now stage 2  

    Too much waiting time since mammogram Oct 9 2015

    My sentinel node incision is so sore even though it is healed

     

  • Just_lori6
    Just_lori6 Member Posts: 76
    Options

    Hi Linda

    Mine was some what similiar.  I was diagnosed In May with stage3A.  I had one tumor 2.5cm with one lymph node.  I can tell you that you are not alone in how you feel scared.  It is so scary.  I think the more information you can obtain will help you better understand.  This website is really good too.  also you can go to Breastcancer.org.  very good information on there too. 

    My treatment plan was different.  i had 6 rounds of chemo, once every 3 weeks .  I will tell you this, Linda, Life still goes on even through your treatments.  There are good days and not so good days.  And after your first couple treatments you will know what to expect.  I took time off work. I was lucky enough to take a LOA at my job.  Since i work in a casino, i figured i didn't want to catch anything since my immune system is jeopardized.  After chemo, i then had double masectomy with beginning reconstruction.  This is where i am today.  It has been 10 days since my big surgery.  Unfortunely they still found cancer in what they took out, but it was very little.  So i have to go through radiation.  At first, all my old feelings came back from the first day i heard i had cancer.  But then, i spoke to my surgeons nurse, and it is good to know they got everything out, and radiation is just another way to make sure my chances of cancer coming back will be hardly any at all!  So,  you will see as you go about your treatments, that you will want to do anything you possibly can to make sure it doesn't come back!

    I also know how you feel about all the tests they put you through.  It is nerve racking.  I couldn't have a cat scan because my stupid insurance would not appove it, so I had to go about a harder way to have tests done to make sure it wasn't anywhere else in my body.  Thank goodness it all came out clean!

    Good luck to you my dear,  stay in touch and let us know how you are doing

    Thank you\

    Thank you for your advice! You've made me feel much better!

    Today I saw the oncologist who always leaves me feeling worse than when I went in. I went in thinking I'll be okay after chemo and radiation but left thinking by the time I get the pet/ct scan I will probably be stage IV (stage 3c now) & we may have to adjust treatments accordingly.  

    I know he can't promise anything but I almost wish he'd just not say anything if he can't say anything encouraging. I hear of so many women going through chemo first then surgery. I had surgery first. How are you doing after surgery? My pain is pretty much gone except when I go back to get my expanders filled. I have canceled the fill on Monday as I need a break before chemo starts. 

    I got a LOA from my job to. I am hoping to go back part time during chemo but like you with a lowered  immune system I don't want to get sick.I will be starting chemo a few days before Christmas once every 2 weeks for 16 weeks, total of 8 treatments and then 6 weeks of radiation. 

    I ask My self daily if I'm going to wake up from this dream but I'm still here.

    I hope your doing great! 

    Thank you so much for your story, you really have helped me feel better~

    Keep in touch ~

     

  • Just_lori6
    Just_lori6 Member Posts: 76
    Options

    My port was put in at the

    My port was put in at the hospital by my surgeon.  I was put under for it.  It did not take long.  Before I was released from the hospital, the med people brought in a portable x-ray machine to be sure everything was right.  It was.  It really did not hurt, but it was weird to get used to having there -- just below my collarbone.  I could see the small bump from its being just under the skin.  I would say the pain is minimal, if there is any.  I do not recall.   Because I was still healing from my other surgery, I was sleeping in the recliner chair.  That probably was also a good thing, as I did not have problems sleeping because of discomfort. 

    I am doing well . . . still clear.  I now see my onc every six months instead of every three.  That started mid-2014.  My aches and pains now are mostly due to my age and my genetics. 

    Laughing

    Port coming up

    I will be getting my port put in on Tuesday next week. It seems creepy to me, I feel like I'm am turning a monster but I do know a port is the best option. They can never find my veins & as often as I will be getting chemo it'll save me a lot of pain and hassle. I'm happy to hear it will be quick and paid less. 

    I slept in the recliner for a week after my surgery. Laying flat in bed just wasn't working for me. 

    That's great your doing good now! All of these success strikes are just what I need! 

    Thanks again~~ Lori 

     

  • Puffin2014
    Puffin2014 Member Posts: 531 Member
    Options
    Brbm51 said:

    2015-12-10 I had a lumpectomy

    2015-12-10 I had a lumpectomy Nov 23  2015 because it was stadge1.  One sentinel node positive so have an apt. with oncologist Now stage 2  

    Too much waiting time since mammogram Oct 9 2015

    My sentinel node incision is so sore even though it is healed

     

    sore sentinel node incision

    My sentinel node incision stayed tender for a long time, irritating but nothing to worry about.