New 'diagnosee' is looking for info.

Findingout
Findingout Member Posts: 132
edited March 2014 in Breast Cancer #1
I just got a cancer diagnosis 36 hours ago. I don't know what to expect; will I have to stop working? How long will surgery keep me home? What about radiation treatment - if I have that, will I be able to work? I don't know any specifics yet about the cancer, surgeon appointment isn't til next week. So I'm in limbo. Had two benign lumps in the past; thought this was just sore scar tissue, but it kept growing. It's good to have this network of all of you. Thanks for anything you can share. It's called Spindle Cell, evidently somewhat rare for breast cancer.
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Comments

  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    Hi - I'm sorry I don't know
    Hi - I'm sorry I don't know anything specific about the type of cancer that you have, but I can share my experience with you. I'm so sorry you have to be here with a cancer diagnosis, but we're a pretty strong group of sisters here who hold each other up when necessary.
    I had IDC, stage 2, in my right breast. I had a bilateral mastectomy with tissue expanders placed at that time for immediate reconstruction. I stayed 2 nights in the hospital and needed a good week for recovery at home. I don't work outside of the home, i have a 2 yr old and a 9 yr old-i had quit my job at the end of my pregnancy with my baby.
    Once I healed from that surgery, I had another procedure to have a chemo port placed right under the skin above my breast (clavicle area), and I had 6 rounds of chemo starting in August. I didn't have to have any radiation, so I don't know specifically how it will affect your work, but I do know that usually radiation is daily for a period of 5 or so weeks. My mom was diagnosed with BC 2 months after I was, she had a lumpectomy and will start radiation early next year, as she has 1 more chemo left next week. I'm sure some of the ladies who've had radiation will chime in with their experiences, some have had lots of fatigue, others not so much. I have to give kudos to ANYone going through this and still working. The emotional toll of it all and the chemo completely wiped me out, there's no way I could have, but please don't let that discourage you, there's lots of working sisters on here.
    Please keep us updated after your surgeon appointment next week & know that we're here for you :)
    *hugs*
    Heather
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Warm Welcome!
    We're all here to support & encourage each other. Glad you found us, though sorry for the reason. The fact that your mind is spinning with questions is totally understandable. Unfortunately, specific answers are yet to be determined - because so much depends on variables. Even with identical surgery/treatment - no two patients respond the same.

    Surgery: lumpectomy - recovery is ususally several days, mastectomy - several weeks.
    Radiation: treatment is daily (usually 6-7 weeks/5 days a week, Mon.-Fri.), though the appointments are quick. Intense fatigue is a very common side effect.

    Some patients work all through their treatments - including chemotherapy. Some simply cannot/couldn't (like me). Dosages, etc. differ, as do the individual's response. Also, much depends on your own employer and their willingness to be flexible, if needed.

    For now, take a deep breath. The "waiting game" is really tough. You'll get at least some real answers next week, via your surgeon appointment. And treatment recommendations are based on final post-surgery pathology (if surgery is the 1st step).

    In the meantime, know that we are here for you. The Board is open 24/7 each & every day. Many members are currently in treatment, many others have already been there/done that.

    With best wishes, and...

    Kind regards, Susan
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Welcome findingout!!
    You have come to the right place for support, encouragement and knowledge. I have had both a lumpectomy and bilateral mastectomy. I have also had chemo and radiation (after the lumpectomy). I continued to work throughout my treatments. I had my chemo (Cytoxan/Taxotere) on Thursday and took Friday off from work. I went back on Monday. I had 33 radiation treatments and continued to work throughout. Let me also say that we all react differently to our treatments AND our treatments are different based on the various types and stage of our cancer. With all that said, keep us in the loop and we will walk with you throughout your journey.
  • Findingout
    Findingout Member Posts: 132

    Hi - I'm sorry I don't know
    Hi - I'm sorry I don't know anything specific about the type of cancer that you have, but I can share my experience with you. I'm so sorry you have to be here with a cancer diagnosis, but we're a pretty strong group of sisters here who hold each other up when necessary.
    I had IDC, stage 2, in my right breast. I had a bilateral mastectomy with tissue expanders placed at that time for immediate reconstruction. I stayed 2 nights in the hospital and needed a good week for recovery at home. I don't work outside of the home, i have a 2 yr old and a 9 yr old-i had quit my job at the end of my pregnancy with my baby.
    Once I healed from that surgery, I had another procedure to have a chemo port placed right under the skin above my breast (clavicle area), and I had 6 rounds of chemo starting in August. I didn't have to have any radiation, so I don't know specifically how it will affect your work, but I do know that usually radiation is daily for a period of 5 or so weeks. My mom was diagnosed with BC 2 months after I was, she had a lumpectomy and will start radiation early next year, as she has 1 more chemo left next week. I'm sure some of the ladies who've had radiation will chime in with their experiences, some have had lots of fatigue, others not so much. I have to give kudos to ANYone going through this and still working. The emotional toll of it all and the chemo completely wiped me out, there's no way I could have, but please don't let that discourage you, there's lots of working sisters on here.
    Please keep us updated after your surgeon appointment next week & know that we're here for you :)
    *hugs*
    Heather

    looking for info
    Dear Heather, thank you so much for sharing your experience - it's very helpful! I'd say, having a 2 and 9 yr old at home is work enough, and truly wonder how you managed it. One of my jobs is work at home, on the computer. Did the chemo make you feel sick, or just tired, or both?
  • joannstar
    joannstar Member Posts: 403 Member
    Everyone's protocol is so different
    I was dx on 8/19/10 with Invasive BC Stage 1B, High Grade, Triple Negative. That dx was given after a stereotactic core biopsey and 2 lumpectomies(a second was needed to get clean margins).
    I took a week off of work after the surgeries (on first one when they took my nodes I had a drain for several days).
    So far I've had 4 of 6 T-C chemo treatments. I get them on Friday, so I take that day off and then I get a neulasta shot on Sunday and sleep all that day. By Tuesday I'm aching so much that it is hard for me to sit at a desk and work so I end up taking that day off also. So, each cycle (every three weeks), I need to take 2 days off work.
    I do curtail all of my activities the week after chemo because I feel crummy, a bit queasy and very achey. I'm going for my 5th treatment on Friday and then only 1 more before I start 6.5 weeks of radiation.
    Others can tell you about their work experiences during radiation, I'm sure.
    Let us know your dx when you get it. There are a lot of us "warriors" that are here to support you.
    Hugs,
    JoAnn
  • Findingout
    Findingout Member Posts: 132

    Warm Welcome!
    We're all here to support & encourage each other. Glad you found us, though sorry for the reason. The fact that your mind is spinning with questions is totally understandable. Unfortunately, specific answers are yet to be determined - because so much depends on variables. Even with identical surgery/treatment - no two patients respond the same.

    Surgery: lumpectomy - recovery is ususally several days, mastectomy - several weeks.
    Radiation: treatment is daily (usually 6-7 weeks/5 days a week, Mon.-Fri.), though the appointments are quick. Intense fatigue is a very common side effect.

    Some patients work all through their treatments - including chemotherapy. Some simply cannot/couldn't (like me). Dosages, etc. differ, as do the individual's response. Also, much depends on your own employer and their willingness to be flexible, if needed.

    For now, take a deep breath. The "waiting game" is really tough. You'll get at least some real answers next week, via your surgeon appointment. And treatment recommendations are based on final post-surgery pathology (if surgery is the 1st step).

    In the meantime, know that we are here for you. The Board is open 24/7 each & every day. Many members are currently in treatment, many others have already been there/done that.

    With best wishes, and...

    Kind regards, Susan

    Thank you
    Thanks Susan, your info is invaluable to me right now. I had two lumpectomies in the past, 2002 and 2005, both "inconclusive" at biopsy, found to be benign upon removal, so obviously I expected this would be the same. I plan to be on this site a lot; I'm so thankful it's here. My mind is definitely spinning, you got that right, and I know no one has the answers I seek, but your feedback is really all I need, so thank you. - Lin
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I'm so sorry you've had to
    I'm so sorry you've had to find us, but this is the most supportive compassionate, caring group of people you will find.

    It's already been said that everyone's treatment is different. I have Inflammatory BC, so I get chemo first (just finished), then mastectomy in Jan, and rads after that. Know that whatever route is right for you, we will be here to support you.

    Some advice for you...start writing your questions down as you think of them, keep them in the same place. Then take it with you for your appointment, so you get all the answers. Also ask how to contact the doc if you have more questions after the appointment. Many people take notes, many bring someone to the appointment, some even record the appointment, to help remember all the answers. Also, I put together a binder right after I was diagnosed. That way I have one place to keep track of dr. phone numbers, instructions, medications, questions, etc.

    As for working, I chose to take a leave of absence. My job demanded 50 plus hours a week, and I knew I couldn't do it well while fighting this battle. (By the way, I keep all my LOA paperwork in my binder too.)

    Please continue to let us know how you are doing.

    Hugs,

    Linda
  • Findingout
    Findingout Member Posts: 132

    I'm so sorry you've had to
    I'm so sorry you've had to find us, but this is the most supportive compassionate, caring group of people you will find.

    It's already been said that everyone's treatment is different. I have Inflammatory BC, so I get chemo first (just finished), then mastectomy in Jan, and rads after that. Know that whatever route is right for you, we will be here to support you.

    Some advice for you...start writing your questions down as you think of them, keep them in the same place. Then take it with you for your appointment, so you get all the answers. Also ask how to contact the doc if you have more questions after the appointment. Many people take notes, many bring someone to the appointment, some even record the appointment, to help remember all the answers. Also, I put together a binder right after I was diagnosed. That way I have one place to keep track of dr. phone numbers, instructions, medications, questions, etc.

    As for working, I chose to take a leave of absence. My job demanded 50 plus hours a week, and I knew I couldn't do it well while fighting this battle. (By the way, I keep all my LOA paperwork in my binder too.)

    Please continue to let us know how you are doing.

    Hugs,

    Linda

    Thx for your invaluable information!
    This is all invaluable information. I will definitely record the appointment, thanks so much for that. And to Joann about work - this is helpful, I can definitely move my work hours around, I have that benefit, with 2 jobs, both with flexibility. So I feel blessed, in that area, at least. I'm on my own, for the past 3 months, so it's ironic this should happen now... My best to all of you, and big hugs, from Lin
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member

    looking for info
    Dear Heather, thank you so much for sharing your experience - it's very helpful! I'd say, having a 2 and 9 yr old at home is work enough, and truly wonder how you managed it. One of my jobs is work at home, on the computer. Did the chemo make you feel sick, or just tired, or both?

    The chemo made me just
    The chemo made me just exhausted, physically and emotionally. I was really achy also & got alot of back & shoulder pain from it & was on painkillers for the entire time I was on chemo.
    I never threw up from chemo, never had nausea to the point where it felt like i was going to throw up. I got steroids & anti nausea meds in my IV along with the chemo, so actually for a few days afterward I'd eat everything in sight, the steroids made me feel like I was starving! I did get heartburn alot, which got worse as I had more infusiont of the chemo, constipated alot (thank you, painkillers..), and my taste buds all but disappeared.
    But, the side effects wore off very quickly after I finished with my chemo.
    We ended up putting my 2 yr old in daycare because I just physically could not keep up with her. It was tough but I had to do it, and luckily the daycare is owned by my husband's cousin, so I don't have worries about her being with a stranger!
    *hugs*
    Heather
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138

    Thx for your invaluable information!
    This is all invaluable information. I will definitely record the appointment, thanks so much for that. And to Joann about work - this is helpful, I can definitely move my work hours around, I have that benefit, with 2 jobs, both with flexibility. So I feel blessed, in that area, at least. I'm on my own, for the past 3 months, so it's ironic this should happen now... My best to all of you, and big hugs, from Lin

    Welcome Findingout
    I really cannot add much to what others have told you but wanted to welcome you. I am sorry you need to be here but glad you found us. This is a great group of women and a few men. I had a lumpectomy in March, 4 chemo tx of Taxotere and Cytoxin, 30 rads and am now on Tamoxifen. I worked all through my chemo. I was never sick but just really tired and foggy feeling for a few days after tx, the tiredness lasted longer than anything.My tx's were on Fri. and Sunday was usually the worst day. God Bless
    (((Hugs))) Janice
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    everyone is so so different..
    sorry to hear this...just take one day at at time...

    I misseed just over 2 wks of work (lumpectomy) and did my radiation on my lunch hour...I had my husband and close friend come for appt with me at the start...more ears the better and after so much info my normally great memory was out the door! so great help with others there to listen.
  • GayleMc
    GayleMc Member Posts: 311 Member

    everyone is so so different..
    sorry to hear this...just take one day at at time...

    I misseed just over 2 wks of work (lumpectomy) and did my radiation on my lunch hour...I had my husband and close friend come for appt with me at the start...more ears the better and after so much info my normally great memory was out the door! so great help with others there to listen.

    As it has already been said,
    As it has already been said, sorry you have to be here, but as your treatment goes on you will gain such support and information from this board. I was dx last Dec., stage 1 IDC, had lumpectomy, 4 rounds of chemo,taxotere and cytoxin and then 33 rad treatment. I took off work a few days for surgery and about six days after each chemo. Chemo wasn't as bad as I thought it would be but I had some diarrhea at about day 5 and didn't feel comfortable going to work. Worked through the entire rads. Left work at 2 pm and had the treatment at 3pm and then went home to rest. We are all different, so your situation will probably be different. This is truly doable and not at all like the movies depict it. Best of Luck. Warmest wishes, Gayle
  • jo jo
    jo jo Member Posts: 1,175 Member
    Hi Findingout, glad to meet
    Hi Findingout, glad to meet you just sorry you have to be here!
    Like everyone has said...everyone is different in their treatments and response to treatment but i just wanted to say hi!
  • mollyz
    mollyz Member Posts: 756 Member
    jo jo said:

    Hi Findingout, glad to meet
    Hi Findingout, glad to meet you just sorry you have to be here!
    Like everyone has said...everyone is different in their treatments and response to treatment but i just wanted to say hi!

    Hey Lin,I'm MollyZ so glad
    Hey Lin,I'm MollyZ so glad to meet you,but so sorry we have to, I was diagnosed in May and had a mastectomy in June,started chemo in August and still doing it,I had an aggressive chemo at first and it made me sick sick sick everybody is different so you might handle it much better so many on here did i consider me being rare with the bad sickness,Lost all my hair and most us did on the board and please don't stress over that part of this battle we're here to get better and live so if it means losing your hair so be it nobody wanted to but we all have delt with it ,it was the hardest to do.where do you live? I live in S.C. but everybody on here are threw out the us and canada. hugs to you don't worry about the unknown. MollyZ
  • pbrndm5
    pbrndm5 Member Posts: 83

    Thx for your invaluable information!
    This is all invaluable information. I will definitely record the appointment, thanks so much for that. And to Joann about work - this is helpful, I can definitely move my work hours around, I have that benefit, with 2 jobs, both with flexibility. So I feel blessed, in that area, at least. I'm on my own, for the past 3 months, so it's ironic this should happen now... My best to all of you, and big hugs, from Lin

    Hi Finding Out
    Welcome,though itwould have been better to meet under diffent circumstances. I was diagnosed in November and i am having a lumpectomy on January 4.(just moved upone week from Jan. 11).The plan is to have the partial breat radiation,however the best I can figure, I won't know if it's doable until surgery.

    I know how you feel, I too couldn't think or remember anything the Dr.told me.However, as time goes on you did get some answers. I just recently had Pet scan and bone scans,but I still don'tknow results. Seems like it's hurry up and wait.

    This is a great place to connect with other people going thru similar things..My DR. did say to treat your cancer(mine is invasive carcinoma,not sure of stage yet) like a fingerprint. While we all have breast cancer, each case is unique.

    Maybe we could stay in touch. GOOD LUCK!
  • Findingout
    Findingout Member Posts: 132
    mollyz said:

    Hey Lin,I'm MollyZ so glad
    Hey Lin,I'm MollyZ so glad to meet you,but so sorry we have to, I was diagnosed in May and had a mastectomy in June,started chemo in August and still doing it,I had an aggressive chemo at first and it made me sick sick sick everybody is different so you might handle it much better so many on here did i consider me being rare with the bad sickness,Lost all my hair and most us did on the board and please don't stress over that part of this battle we're here to get better and live so if it means losing your hair so be it nobody wanted to but we all have delt with it ,it was the hardest to do.where do you live? I live in S.C. but everybody on here are threw out the us and canada. hugs to you don't worry about the unknown. MollyZ

    Well it's surely a blessing
    Well it's surely a blessing hearing from all of you - definitely not like coming home to an empty house to ponder my new predicament alone! Thank you thank you... Now all I need to do is wait the 7 days til my appt. Strangely, my ex jumped on board and is taking me to my appointment next week, over an hour from here, and that is a good thing. Cheers, and my heartfelt blessings to all of you amazing women, you are a gift - - Lin
  • Findingout
    Findingout Member Posts: 132
    pbrndm5 said:

    Hi Finding Out
    Welcome,though itwould have been better to meet under diffent circumstances. I was diagnosed in November and i am having a lumpectomy on January 4.(just moved upone week from Jan. 11).The plan is to have the partial breat radiation,however the best I can figure, I won't know if it's doable until surgery.

    I know how you feel, I too couldn't think or remember anything the Dr.told me.However, as time goes on you did get some answers. I just recently had Pet scan and bone scans,but I still don'tknow results. Seems like it's hurry up and wait.

    This is a great place to connect with other people going thru similar things..My DR. did say to treat your cancer(mine is invasive carcinoma,not sure of stage yet) like a fingerprint. While we all have breast cancer, each case is unique.

    Maybe we could stay in touch. GOOD LUCK!

    How long is the wait for pet
    How long is the wait for pet and bone scan results? And, I don't even know yet what partial breast radiation is... I'm trying to learn all the terms, I guess that's how I'm trying to deal with it at this point. It does look like people all have different reactions to treatment but there is the possibility of working, even part time. Yes, I can stay in touch... thanks for your post.
  • Texasgirl10
    Texasgirl10 Member Posts: 668

    Well it's surely a blessing
    Well it's surely a blessing hearing from all of you - definitely not like coming home to an empty house to ponder my new predicament alone! Thank you thank you... Now all I need to do is wait the 7 days til my appt. Strangely, my ex jumped on board and is taking me to my appointment next week, over an hour from here, and that is a good thing. Cheers, and my heartfelt blessings to all of you amazing women, you are a gift - - Lin

    Hi Findingout
    You have come to the right place, I'm just so sorry that you have a reason to be here. I so understand your feelings of being scared and in shock. I too was recently diagnosed ( 3 weeks ago) with Inflammatory Breast Cancer. It's also a very rare and aggressive cancer. I started chemo last Thursday and I did fine, except the third day was pretty rough. I did not get sick, I just felt tired & rundown and at that point I just knew "chemo sucks", but honestly it wasn't bad at all. I'm a nurse and I have been working everyday this week. This is the first week that I've been able to work because I had several appts each day for the first 2 weeks after I was diagnosed. However, like so many of our sisters have already told you, each person is different. I will be praying for you and I will add you to our prayer list at church. I know that you are scared and feeling helpless right now, but please know that your sister's in pink will hold you up and help carry you through this courageous journey.

    Hugs to you,

    Dawne
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member

    Warm Welcome!
    We're all here to support & encourage each other. Glad you found us, though sorry for the reason. The fact that your mind is spinning with questions is totally understandable. Unfortunately, specific answers are yet to be determined - because so much depends on variables. Even with identical surgery/treatment - no two patients respond the same.

    Surgery: lumpectomy - recovery is ususally several days, mastectomy - several weeks.
    Radiation: treatment is daily (usually 6-7 weeks/5 days a week, Mon.-Fri.), though the appointments are quick. Intense fatigue is a very common side effect.

    Some patients work all through their treatments - including chemotherapy. Some simply cannot/couldn't (like me). Dosages, etc. differ, as do the individual's response. Also, much depends on your own employer and their willingness to be flexible, if needed.

    For now, take a deep breath. The "waiting game" is really tough. You'll get at least some real answers next week, via your surgeon appointment. And treatment recommendations are based on final post-surgery pathology (if surgery is the 1st step).

    In the meantime, know that we are here for you. The Board is open 24/7 each & every day. Many members are currently in treatment, many others have already been there/done that.

    With best wishes, and...

    Kind regards, Susan

    I don't know about your
    I don't know about your specific cancer either. I have never heard of it. With a lumpectomy, you probably need a week to recuperate. I don't know about a mastectomy. I didn't work thru rads, but, many do. You just have to get lots of extra sleep.

    Wishing you good luck,

    Jan
  • Kat11
    Kat11 Member Posts: 1,931 Member

    Hi Findingout
    You have come to the right place, I'm just so sorry that you have a reason to be here. I so understand your feelings of being scared and in shock. I too was recently diagnosed ( 3 weeks ago) with Inflammatory Breast Cancer. It's also a very rare and aggressive cancer. I started chemo last Thursday and I did fine, except the third day was pretty rough. I did not get sick, I just felt tired & rundown and at that point I just knew "chemo sucks", but honestly it wasn't bad at all. I'm a nurse and I have been working everyday this week. This is the first week that I've been able to work because I had several appts each day for the first 2 weeks after I was diagnosed. However, like so many of our sisters have already told you, each person is different. I will be praying for you and I will add you to our prayer list at church. I know that you are scared and feeling helpless right now, but please know that your sister's in pink will hold you up and help carry you through this courageous journey.

    Hugs to you,

    Dawne

    Hi findingout, I just wanted
    Hi findingout, I just wanted to welcome you. So sorry for your reason for being here. We are all in the same boat here so you have come to the right place. The beginning is the worst time. Make sure you have someone with you at your doctor appointments if you can. It is very helpful also if you can write any questions down before hand and bring them with you. Take notes so you can remember what you are told because you will be given so much information you will not remember it all. Most important, if you don't understand what you are being told make them explain it to you untill you do understand. Don't be afraid to ask all the questions you need to. I wish you the best. We are all here for you any time.
    Kathy ~