Hi, new here and need help!

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ccincin
ccincin Member Posts: 82
edited March 2014 in Breast Cancer #1
Hi,
I'm a 39 yr old mom of 3, diagnosed with stage II bc after a modified radical mastectomy on Sept 29. IDC and in Situ with 2 of 22 nodes positive one of which was outside the capsule in the perinodal fat (like I'm supposed to know what that means) I've met once with the oncologist. Not overly impressed with the chemo area in complete dissarray!! I am supposed to have 8 rounds of chemo every 3 weeks for 6 months then 6 weeks of radiation every day.
I know there are questions I should be asking but just don't know what to ask? Any help would be greatly appreciated!!
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  • Miss Murphy
    Miss Murphy Member Posts: 302
    #2
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    Sorry but Glad
    Hi!

    I'm sorry you had to find us but glad you did! I can't answer any questions about chemo as I didn't need to do that. I had a masectomy so if you have any questions about that, then I'd be happy to help. There are lots of other on this board who will wecome you and be able to tell you what you need to know about chemo and what questions to ask.

    Good luck with your treatment and hang in there.

    Hugs, Sally
  • ccincin
    ccincin Member Posts: 82
    #3
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    Miss Murphy said:

    Sorry but Glad
    Hi!

    I'm sorry you had to find us but glad you did! I can't answer any questions about chemo as I didn't need to do that. I had a masectomy so if you have any questions about that, then I'd be happy to help. There are lots of other on this board who will wecome you and be able to tell you what you need to know about chemo and what questions to ask.

    Good luck with your treatment and hang in there.

    Hugs, Sally

    thank you!
    Its so confusing! I thought everyone went thru at least some chemo after a mastectomy? Shows how much I know!
  • AMomNETN
    AMomNETN Member Posts: 242
    #4
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    Hi Ccin
    Hi,
    .I'm happy to meet you but these cirmumstance could be far bette. I had a bilateral mastecomy on Mar. 28, with expander put in. Mine was stage 2 adn I think DCIS but mine was the agressive one. Thing you can do for chemo; comfy clothes,books to read,or favorivte active extra fluids (water),comfort food and maybe a blanket, those rooms can get to cold. I hope you breeze through it. The best thing I can tell you is dring LOTS LOTS,AND LOTS, of WATER!!!
    I want to use Biotene toothpaste and mouthwash. I hope I've helped. You'll make lots of have, will keep winning this war.

    Janie
  • ccincin
    ccincin Member Posts: 82
    #5
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    AMomNETN said:

    Hi Ccin
    Hi,
    .I'm happy to meet you but these cirmumstance could be far bette. I had a bilateral mastecomy on Mar. 28, with expander put in. Mine was stage 2 adn I think DCIS but mine was the agressive one. Thing you can do for chemo; comfy clothes,books to read,or favorivte active extra fluids (water),comfort food and maybe a blanket, those rooms can get to cold. I hope you breeze through it. The best thing I can tell you is dring LOTS LOTS,AND LOTS, of WATER!!!
    I want to use Biotene toothpaste and mouthwash. I hope I've helped. You'll make lots of have, will keep winning this war.

    Janie

    dcis and idc
    Is what I had. Apparently my entire breast had dcis and a grade III 2 cm tumor of IDC. Strange thing is I kept feeling a fullness in my armpit so had an ultrasound in march 09 of breast and armpit that showed nothing!
    I really just want to get treatments started since it feels like nothings being done now!
    Any tips on getting range of motion back or numbness gone?
  • mollyz
    mollyz Member Posts: 756 Member
    #6
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    newbie
    Hi ccinin, I was 49 when i was diagnosed in May ,but since then had a birthday,never would have imagined turining 50 with b/c, I had stage 11 also and I also had a radical mastectomy Dcis in situ with 8 nodes positive out of 16. It's still overwhelming to me to,I had 4 rounds every 3 weeks of somthing called TEC you will learn all the names and language of the chemo talk, I'm so sorry for you having to go threw this with 3 children I have 2 boys 13 and 19, in the pic you have a little one are all of yours little? it's some sweet ladies on this site but don't get caught up because everybody is different so what made me sick might not make you, just hang in there,the worst part for me was the first round of chemo and then my hair was the next everybody don't lose all there hair but the aggressive chemo i had took mine out.Huggs to you Mollyz
  • mwallace1325
    mwallace1325 Member Posts: 806
    #7
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    Nice to meet but
    so sorry about the circumstances. I was diasnosed stage IIIa IDC with 2/14 nodes positive. They'll let you know if you're estrogen/progestron/her positive or negative. These will help in determining additional treatment after chemo and rads. If you're not happy with your onc or the chemo area, think about going somewhere else. Your onc should explain everything. You may want to take someone with you to appts cause it's alot to remember and two heads, especially one not dealing directly with BC are better than one. Chemo sucks. I'm not saying anything everyone else here won't say, but it's also DOABLE. You'll get thru this and rads is much easier on you than chemo. Find a doctor and team that you're happy with and that's half the battle. Remember you'll get thru this. We're all here for you. That little girl in the picture is certainly worth fighting thru this for, no matter who she is. Keep us posted as you learn more and we're here to help whether it's info or you just needing to vent.

    marge
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #8
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    ccincin said:

    thank you!
    Its so confusing! I thought everyone went thru at least some chemo after a mastectomy? Shows how much I know!

    OncoType Test
    Not everyone does chemo. My bc was estrogen positive and my lymph nodes were clear so I was able to do the OncoType test. That predicts how effect chemo would actually be for you. My score was low indicating that chemo would not improve my chances of a recurrance by much. I'm currently taking Tamoxifen.

    If your dx was estrogen positive, you may want to ask about the test. I'm not sure if they are doing it if you have lymph node involvement but someone else on the board may be able to answer this.

    And don't worry about not knowing much - we all started out not knowing much about this disease but you'll be on a quick learning curve and we're here to help!

    Hugs, Sally
  • ccincin
    ccincin Member Posts: 82
    #9
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    mollyz said:

    newbie
    Hi ccinin, I was 49 when i was diagnosed in May ,but since then had a birthday,never would have imagined turining 50 with b/c, I had stage 11 also and I also had a radical mastectomy Dcis in situ with 8 nodes positive out of 16. It's still overwhelming to me to,I had 4 rounds every 3 weeks of somthing called TEC you will learn all the names and language of the chemo talk, I'm so sorry for you having to go threw this with 3 children I have 2 boys 13 and 19, in the pic you have a little one are all of yours little? it's some sweet ladies on this site but don't get caught up because everybody is different so what made me sick might not make you, just hang in there,the worst part for me was the first round of chemo and then my hair was the next everybody don't lose all there hair but the aggressive chemo i had took mine out.Huggs to you Mollyz

    kids
    My other two are adult kids (still my babies) and the one in pic is almost 5. She is obsessed with my missing breast and tells everyone I have to take medicine and will be bald. Which she hysterically laughs about ;) she's a crazy one and my husband is a firefighgter gone minimum e days a shift so I'm hoping to keep up with the spitfire she is!
    May sound strange but I'm not so worried about the hair. Its the skin that amazes me. Every chemo patient I see I just stare at in awe. It seems that skin is just flawless!
  • Rague
    Rague Member Posts: 3,653 Member
    #10
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    AMomNETN said:

    Hi Ccin
    Hi,
    .I'm happy to meet you but these cirmumstance could be far bette. I had a bilateral mastecomy on Mar. 28, with expander put in. Mine was stage 2 adn I think DCIS but mine was the agressive one. Thing you can do for chemo; comfy clothes,books to read,or favorivte active extra fluids (water),comfort food and maybe a blanket, those rooms can get to cold. I hope you breeze through it. The best thing I can tell you is dring LOTS LOTS,AND LOTS, of WATER!!!
    I want to use Biotene toothpaste and mouthwash. I hope I've helped. You'll make lots of have, will keep winning this war.

    Janie

    Not true in all chemo sites
    Not true in all chemo sites - the one I went to had heated blankets for you. I don't remember about the open front cubicles as I only had 4 A/C in them rather or not they had thermostats but the bed cubicles (did 12 Taxol in them) all were enclosed in glass and had their own heating/cooling thermostat so it could be adjusted to your needs. Mine was always cranked up as it was winter and I get cold easy anyway.

    Susan
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #11
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    hi :)
    Hi & welcome :) I'm sorry u have to be here but this is a great place to be if you have breast cancer. I'm 35, mom of 2 girls, also with stage 2. How are your kids handling everything? That was my main concern when I was diagnosed, my daughters are 9 and 2, so the baby hasn't really been affected much, and my 9 yr old has handled it much better than I thought she would, although she does talk to a counselor every 2 weeks. It's quite a challenge going through surgeries & chemo with children! I had a bi-lateral mastectomy also. I'm sure as you get farther into treatment you will have lots of questions! We're all here to help you out & give you our information & advice.
    *hugs*
    Heather
  • ccincin
    ccincin Member Posts: 82
    #12
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    mwallace1325 said:

    Nice to meet but
    so sorry about the circumstances. I was diasnosed stage IIIa IDC with 2/14 nodes positive. They'll let you know if you're estrogen/progestron/her positive or negative. These will help in determining additional treatment after chemo and rads. If you're not happy with your onc or the chemo area, think about going somewhere else. Your onc should explain everything. You may want to take someone with you to appts cause it's alot to remember and two heads, especially one not dealing directly with BC are better than one. Chemo sucks. I'm not saying anything everyone else here won't say, but it's also DOABLE. You'll get thru this and rads is much easier on you than chemo. Find a doctor and team that you're happy with and that's half the battle. Remember you'll get thru this. We're all here for you. That little girl in the picture is certainly worth fighting thru this for, no matter who she is. Keep us posted as you learn more and we're here to help whether it's info or you just needing to vent.

    marge

    hormone negative
    Marge, what made yours stage III?
  • cahjah75
    cahjah75 Member Posts: 2,631
    #13
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    Welcome to the bc network
    Ask all the questions you want. You've come to the right place. We can share what we've experience and offer suggestions. I had bilateral mastectomy in June and just had my 5th chemo cocktail today of Taxotere/Cytoxan. I'm on a 3 week cycle too and get a Neulasta shot the following day which has kept my white blood cells up! Side effects are annoying but nothing serious. I have one more chemo treatment to go and I'm done. I was ER/PR+ and HER2-. I had Invasive Lobular Carcinoma 6.1cm in rt breast & LCIS in left breast. I'm the 5th in my family with bc. Thankfully, I had no lymph node involvement. I'll meet with a radiologist/oncologist but my med onc doesn't think I'll need rads. My sister did the 6 weeks of rads 9 years ago. You'll get quite tired but all is doable.
    {{hugs}} Char
  • sea60
    sea60 Member Posts: 2,613
    #14
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    cahjah75 said:

    Welcome to the bc network
    Ask all the questions you want. You've come to the right place. We can share what we've experience and offer suggestions. I had bilateral mastectomy in June and just had my 5th chemo cocktail today of Taxotere/Cytoxan. I'm on a 3 week cycle too and get a Neulasta shot the following day which has kept my white blood cells up! Side effects are annoying but nothing serious. I have one more chemo treatment to go and I'm done. I was ER/PR+ and HER2-. I had Invasive Lobular Carcinoma 6.1cm in rt breast & LCIS in left breast. I'm the 5th in my family with bc. Thankfully, I had no lymph node involvement. I'll meet with a radiologist/oncologist but my med onc doesn't think I'll need rads. My sister did the 6 weeks of rads 9 years ago. You'll get quite tired but all is doable.
    {{hugs}} Char

    Hi new Sister!
    Gosh, there is SO much and it certainly is overwhelming! Funny that you mentioned skin and Chemo. If anything, that was the one thing I enjoyed during treatment. I had beautiful skin.

    I was diagnosed at 45 during a routine mammo on Thursday. Went straight from the Radiologist's office to the Surgeon's office for a cone biopsy. Met with my Oncologist the very next day, Friday...the whole time I kept thinking this was just a really bad dream. I think the very hardest times were waking up the first several weeks and realizing it wasn't a bad dream but reality. Started Chemo a week and a half later to shrink a 5cm. size estrogen/HER2 positive tumor.

    Thank God for His strength He gave me and a beautiful Sister who dutifully took notes and never left my side. Half the time, I couldn't even soak anything in...all the meds, appointments, treatments.

    That was 5 years ago and 7 surgeries later I AM still here...praise God! There's a LOT of tips these beautiful women have shared on starting Chemo treatments...drink lots of water, eat healthy, take Emend.

    We're all here for you and for one another.

    You have a beautiful daughter!

    Hugs to you,

    Sylvia
  • jo jo
    jo jo Member Posts: 1,175
    #15
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    Hi ccincin welcome to the
    Hi ccincin welcome to the board.
    Im 42...oops sorry just turned 43. I also have stage 2 with lymphnode envolvement. I had bilateral mastectomy with reconstruction (expanders). There is so much info with breast cancer that i dont think anyone knows where to start. Since you just had a mastectomy i will jump on that subject. You said something about wanting to get your range of motion back. Well after each surgery its a really good idea to go thru Physical Therapy cuz they keep ya going with exercises...especially since you have so many surgeries within a short period of time. Plus they do soft tissue therapy on your breast as well to help the healing. I dont know if you got the expanders in but therapy is a blessing with the expanders mostly after each filling. Sorry to say the numbing stays for some time. I had my implants put in in July and still have the numbing around the incision sites and under my pit to my elbow from the lymphnode removal. Which that part was done in Nov 2009. For the most part you will always have some numbing. But it does get better the more you heal from each surgery. unfortantly that part is a slow process.

    Have you got your port yet or are you going to have one?
  • sbmly53
    sbmly53 Member Posts: 1,522
    #16
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    CC
    I, like the others, am happy to meet you, but wish it was under different circumstances.

    Do you have the option of choosing another onc? Being comfortable with your provider is optimal. My first meeting with my onc did not go well, I complained and we met again. He really listened that time and I didn't feel like I was just the next patient.

    Because of where I live (not close to anything) as well as insurance that let me, I was able to pick and choose surgeons, med & rad onc. I asked everyones opinion and went with my heart.

    I was dx'd with invasive ductal carcinoma. Sentinal node pos. ER,PR & HER2 pos. Oncodx score was 4.


    Sue
  • LadyParvati
    LadyParvati Member Posts: 328
    #17
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    Couple of sources of info
    Hi! You've come to an enormously supportive community! I'll add a couple of things:

    Get Dr. Susan Love's Breast Book. The chapter on cancer explains lots of the tests & terminology to help you figure out what the doctors are saying and what questions to ask.

    Check the NCCN Clinical Practice Guidelines in Oncology for Breast Cancer, which are available at www dot nccn dot org. Go ahead and get the physician version; they have "decision trees" that are actually pretty easy to follow. After you figure out what treatment suggestions they have for your particular cancer and status, read through the suggestions. Does what your oncologist is suggesting differ? If so, ask why--it's OK to ask for a rationale! It's also OK--and smart--to ask for second opinions.

    If you feel the least bit uncomfortable with anything you're being told, get a second and maybe even a third opinion.

    I found a lump in my right breast and was diagnosed with triple negative breast cancer last year (9/30/09).

    I interviewed three doctors (asked about 35 questions, guided by Dr. Susan Love's Breast Book and friends who are also survivors) before I made a selection. I learned that the first one was "misinforming" me about long-term consequences of mastectomy versus lumpectomy (turned out she was big on doing mastectomies!). The second and third were both good and gave me the straight scoop, but I "clicked" with the third and chose him and his team.

    I recently had my one-year mammogram on the left, six-month on the right, and am dancing with NED, and I anticipate dancing with NED for years to come.

    Best of luck with everything!

    Sandy
  • Alexis F
    Alexis F Member Posts: 3,598
    #18
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    Rague said:

    Not true in all chemo sites
    Not true in all chemo sites - the one I went to had heated blankets for you. I don't remember about the open front cubicles as I only had 4 A/C in them rather or not they had thermostats but the bed cubicles (did 12 Taxol in them) all were enclosed in glass and had their own heating/cooling thermostat so it could be adjusted to your needs. Mine was always cranked up as it was winter and I get cold easy anyway.

    Susan

    Hi and welcome! I didn't
    Hi and welcome! I didn't have chemo, but, I did have rads. So, when you get to rads, I would be happy to answer any questions.

    Good luck
  • sal314
    sal314 Member Posts: 599 Member
    #19
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    Welcome to the Board...
    though I rather you not have to be here! I know it's overwhelming and there is so much medical lingo to learn. Some people (like me) like to know EVERYTHING about their diagnoses and others are ok with just learning as the go. It might help to read the basics of bc on the Susan G. Komen board or the AMerican Cancer Society board. They have lots of good information. That way, you may have a better idea of what kind of questions you want to ask.

    I was 35 when I was diagnosed 9 years ago with Stage II bc. No node involvement. I went through a lumpectomy, chemo, radiation and 5 years of Tamoxifen. Then I had a mastectomy and reconstruction 6 years later. (long story, so I'll spare ya!) I had a 15 month old son at the time, so I know what it's like to have little ones as you go through treatment! It's a blessing in a way because they keep you going! I also had a miracle baby 4 years later. She is 5 as well. :)

    Have you gotten a second opinion? That's always a REALLY good thing to do. Especially if you're feeling a little leary about the doctors and/or facilities. I went for a second opinion on my chemo treatment and they said the same thing, which made me feel better about the treatment plan.

    Everyone handles chemo differently. I didn't have much of a problem with it. Felt a little under the weather, but nothing major. Mostly just got really tired. I had a 15 mo. old son at the time, so he kept me going and forced me to get out of bed! LOL. Losing my hair took much more of a toll on me than anything else. It was just such a shock to the psyche.

    Radiation was a breeze. You'll just feel really tired. SOme people get burns on their skin, kinda like a sunburn, but I never did. It just felt a little sore. They give you special cream to put on which does help.

    Not sure any of this is helpful to you. Feel free to ask any and all questions. This board is a wonderful resource and the support is amazing!!

    Blessings,
    Sally
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #20
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    sal314 said:

    Welcome to the Board...
    though I rather you not have to be here! I know it's overwhelming and there is so much medical lingo to learn. Some people (like me) like to know EVERYTHING about their diagnoses and others are ok with just learning as the go. It might help to read the basics of bc on the Susan G. Komen board or the AMerican Cancer Society board. They have lots of good information. That way, you may have a better idea of what kind of questions you want to ask.

    I was 35 when I was diagnosed 9 years ago with Stage II bc. No node involvement. I went through a lumpectomy, chemo, radiation and 5 years of Tamoxifen. Then I had a mastectomy and reconstruction 6 years later. (long story, so I'll spare ya!) I had a 15 month old son at the time, so I know what it's like to have little ones as you go through treatment! It's a blessing in a way because they keep you going! I also had a miracle baby 4 years later. She is 5 as well. :)

    Have you gotten a second opinion? That's always a REALLY good thing to do. Especially if you're feeling a little leary about the doctors and/or facilities. I went for a second opinion on my chemo treatment and they said the same thing, which made me feel better about the treatment plan.

    Everyone handles chemo differently. I didn't have much of a problem with it. Felt a little under the weather, but nothing major. Mostly just got really tired. I had a 15 mo. old son at the time, so he kept me going and forced me to get out of bed! LOL. Losing my hair took much more of a toll on me than anything else. It was just such a shock to the psyche.

    Radiation was a breeze. You'll just feel really tired. SOme people get burns on their skin, kinda like a sunburn, but I never did. It just felt a little sore. They give you special cream to put on which does help.

    Not sure any of this is helpful to you. Feel free to ask any and all questions. This board is a wonderful resource and the support is amazing!!

    Blessings,
    Sally

    Welcome ccincin
    Glad you found us but sorry you need to. You will find a wealth of info here from some great ladies and a few great guys. I was diagnosed with IDC stage 1 grade 1 in Jan.10 lumpectomy in March (no nodes involved), finished 4 rounds of Taxotere&Cytoxin July 2nd and 30 rads Sept 7th nearly 3 mos. into 5yrs of Tamoxifen.
    As others have said if you are not comfortable with Onc. please get a 2nd opinion. I kept a notebook and wrote down questions as I thought of them for my next appt. I did well through chemo no nausea just really tired and kinda out of it for a few days. Had tx on Fri. generally Sun. would be my crash day. I worked through all my tx. It is all doable. Be sure to stay hydrated drink lots of water. Feel free to ask anything someone will have an answer for you. God Bless
    (((Hugs))) Janice
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #21
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    Boppy_of_6 said:

    Welcome ccincin
    Glad you found us but sorry you need to. You will find a wealth of info here from some great ladies and a few great guys. I was diagnosed with IDC stage 1 grade 1 in Jan.10 lumpectomy in March (no nodes involved), finished 4 rounds of Taxotere&Cytoxin July 2nd and 30 rads Sept 7th nearly 3 mos. into 5yrs of Tamoxifen.
    As others have said if you are not comfortable with Onc. please get a 2nd opinion. I kept a notebook and wrote down questions as I thought of them for my next appt. I did well through chemo no nausea just really tired and kinda out of it for a few days. Had tx on Fri. generally Sun. would be my crash day. I worked through all my tx. It is all doable. Be sure to stay hydrated drink lots of water. Feel free to ask anything someone will have an answer for you. God Bless
    (((Hugs))) Janice

    I just wanted to say 'Welcome' .. sorry you had to find
    us, but I am glad you found us. We have a great group of women and men fighting this beast! I see that several WARRIORS have posted, please gather as much information here, read books and research. Your world has been turned upside down .. take a deep breathe, jot down terms, things you've heard .. and start a file on your diagnosis - steps needed, treatment plans and surgeries. Put your Oncologist telephone number on speed dial, and ask questions - if something doesn't seem right, or you don't understand .. how it explained to you, over and over again. If you have a tape recorder .. take that with you to every appointment - make sure you are aware and in charge of your body and treatment options!

    Strength and Courage

    Vicki Sam

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