Newly Diagnosed

KEL50
KEL50 Member Posts: 3
edited March 2014 in Breast Cancer #1
I had a lumpectomy on 9/4/09 On 9/10/09 I received the diagnosis of invasive mammary carcinoma of the ductal kind. What a devastating day that was. It totally was not what I expected...I had myself convinced that I would get a good report for being cancer free since everyone was telling me that is usually what happens in most cases...it blew me away.
According to surgeon I need to have either a breast conservation and lymph node biopsy or a radical masectomy...totally my choice he says... but he is strongly suggesting radical mas...saying I will never have to worry about cancer again and not even have to have radiation. The oncolgist says there is no need for radical mas.only radiation since my cancer was small...and if it is not in the lymph nodes I won't need chemo...if in lymph nodes then chemo would be necessary too...I don't get it! Why am I getting 2 different stories? I am so confused!!!I thought this site could help me. So here I am...HELP!!!

Comments

  • tgf
    tgf Member Posts: 950 Member
    so sorry
    I'm so sorry for your diagnosis ... but glad you found us. I'm sure you will be getting other responses soon ... by I would think you need a second opinion from a second oncologist ... who has seen you mammograms and results of your biopsies. That will give you a clearer idea of what treatment you will need.

    Good luck ... and we're here for you ... so just keep asking questions and we'll do the best we can to help out by sharing our knowledge and experiences and supporting each other every step of the way. We're all in this together ...

    hugs.
    teena
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Welcome, KEL50
    Though sorry for the reason you're here. You've joined an amazing group.

    Yes, your decision is personal. It IS your choice. However...

    I wonder... Is your surgeon a BC specialist? Or, general? A mast does NOT always rule out radiation nor chemo. There are members who can vouch for this, from firsthand experience. As I can. Although I underwent lumpectomy - if I had chosen a mast, both chemo and rads would have followed anyway. As a result of lymph node involvement. It is actually post-surgery final pathology tests results which determine recommended next steps.

    Maybe you need more information from both of your doctors. Please don't hesitate to ask them questions - it's a huge decision you'll need to be comfortable with.

    Best wishes to you.
  • cheyennedawn
    cheyennedawn Member Posts: 70
    Welcome
    I just wanted to welcome you to the site. You will meet some wonderful women here, and someone will be able to help you. I understand how you felt when you got your diagnosis, I felt exactly the same way. I had a partial mastectomy on 7/31. The next week I was in my surgeons office, and he delivered the news that it was cancer. I felt like someone had punched me in the stomach! Was so not expecting that diagnosis. So, on 8/12 I had a modified radical mastectomy of my left breast. Luckily, they go all of the cancer. I have not had to have chemo or radiation. Because of the type of tumor I had, I did not have an oncologist, just a general surgeon. But, it seems like your team is not on the same page, so what you may want to do is get a second opinion? Then you have to do what is right for you. I had the option of a more breast sparing surgery, but decided that it was too risky, and I wanted it gone. The breast was "sick", so I chose to have it removed. Wishing you lots of luck. Don't stop asking questions, eventually you will get your answers!

    Hugs,
    Cheyenne
  • MAJW
    MAJW Member Posts: 2,510 Member
    Hang in there!
    I know you are scared and confused......My heart and prayers go out to you.....If you are not comfortable with the two conflicting doctors, get yet another opinion......you don't have to decide ANYTHING today.....don't let them rush you, it's your body and you need to be armed with as much information as possible........but you can get information overload, I know I did! Please, also, if possible, ALWAYS take someone with you when you go to ALL your appointments and have them take notes, because you won't, I promise, hear half of what they tell you! I know I didn't. My brain tended to shut down....I had my husband and sister in law go with me every time, it makes a difference.


    I had a biopsy done in April.....I have stage II ductual carcinoma...stage II only due to the size 2.2 cm....I had sentinel node biopsy done during the lumpectomy on May 20......The surgeon got good, clean, clear margins and NO lymph node involvement, which is BIG....My surgeon who has been a breast specialist for 30 years said that from all the gathered information over the years that survival rates are no better with a radical mastectomy than a lumpectomy......I was also told that even with a mastectomy the cancer can come back due to the muscle wall that the breast is attached to and there is no way to TOTALLY remove all breast tissue.........I had 4 rounds of chemo Cytoxan/Taxotere and it wasn't nearly as bad as I thought it would be! No day at the beach but not horrible, tolerable and doable! I started radiation just this morning. First of 33 treatments. I want to do all I can to prevent this beast from returning and my oncologist believes in being agressive and doing all we can to avoid a reccurence. Again, don't let them rush you........

    Take good care......
    Nancy
  • Kat11
    Kat11 Member Posts: 1,931 Member
    Hi Kel50 and welcome. Sorry
    Hi Kel50 and welcome. Sorry for your diagnosis. I would also be confused with what your being told. However there is a lot of information still needed. Maybe see another doctor and see what is said. My concern is a doctor telling you that you will never have to worry about cancer again. It is my understanding that that is not true. If the breast is gone, you won't get it again in that breast tissue, but it can still come back. I would look for another surgeon just to see what is said. Write down all your questions and take someone with you to your visits. Take notes. Good luck. Rememeber we are all here for you.
  • lanie940
    lanie940 Member Posts: 490 Member
    My aunt had a radical
    My aunt had a radical masectomy in the late 60's. She STILL had radiation. but she never got it again, anywhere. She only had occassional cough from her lung being affected by the RADS. She lived to be in her 80's.
  • e_hope
    e_hope Member Posts: 370
    sorry to hear.. of you
    sorry to hear.. of you diagnosis...

    I would seek a second opinion form a breast care specialist... You can't make your decisions on if you think you may or may not need chemo or rad.. I had a double mastectomy and underwent 8 rounds of chemo and now receiving rad..

    and as far as never returning there is no gar. either way..

    You need to find the answer in yourself on which direction to go.. it is a personal decision which you will have to live with the rest of your life.. you need to ask lots of questions and it helps to speak with fellow woman who have been through it.

    We all had to find the strength in ourselves for the right answer...

    for me.... i chose the double mastectomy... my reasons... I wanted to do everything I felt possible to prevent a recurrence...
  • lanie940
    lanie940 Member Posts: 490 Member
    I had a lumpectomy, my tumor
    I had a lumpectomy, my tumor was small. 1.1 CMs He also told me I wouldn't need RADS if I had a mastecomy IF the nodes were CLEAR. I believe it also depends on what else your Path report says also!
  • KorynH
    KorynH Member Posts: 13
    lanie940 said:

    I had a lumpectomy, my tumor
    I had a lumpectomy, my tumor was small. 1.1 CMs He also told me I wouldn't need RADS if I had a mastecomy IF the nodes were CLEAR. I believe it also depends on what else your Path report says also!

    Hope this helps
    I am very sorry to hear about your diagnosis. I was in your shoes one year ago Oct. 1st. We all here understand what you are feeling and are here to help you. I just wanted to mention that getting different opinions is a good thing and that will help you arrive at the choice that is best for you. My tumors were small also, BUT, and you need to find this out from your own patholgy, it was psotive for the Her2neu overexpression of growth protien and so I needed Herceptin which is a year long infusion and only effective when given with chemo therapy. So skating out of chemo was not an option becuase of this. My nodes were negative, and I had a mastectomy so no radiation. After my initial biopsy and diagnosis they did an MRI to see if I had anything in the other breast, which I did not BUT I did have a second site on the first breast which made lumpectomy out of the question since both sites were more than 5 inches apart from each other. If you are young and have dense breasts I suggest you get an MRI before something gets "missed" and a lumpectomy doesn't catch it all. Lobular carcinoma is frequently missed on mammograms. I had ductal and lobular. Ask lots of questions and bring someone with you to write it all down. It can seem overwhelming. Feel free to message me too. I'd be happy to help you.
    Sending hugs out to you - you will get through this!
    Koryn
  • Cat64
    Cat64 Member Posts: 1,192
    Hi Kel
    Welcome to the Board! Hearing the news you have cancer is devistating enough once,let alone having to hear it twice! What were you first diagnosed with?
    I would also suggest getting a second opinion, by another surgeon! Whether you have a Lump. or Mast.,there is still the chance for it to come back and I can't believe he said that! Read up on your diagnosis/treatments and gather all the info you can before you make your decision. Yes, it is YOUR decision. I would think you are getting two different stories because they are two different kind of doctors.
    This site will truly help you in whatever you need! Advice,hope,support,shoulders,ears,....24/7.
    Take a deep breath and go do something fun this weekend & try to relax!
    Hugz,
    Cathy
  • ColoradoGal
    ColoradoGal Member Posts: 14
    MAJW said:

    Hang in there!
    I know you are scared and confused......My heart and prayers go out to you.....If you are not comfortable with the two conflicting doctors, get yet another opinion......you don't have to decide ANYTHING today.....don't let them rush you, it's your body and you need to be armed with as much information as possible........but you can get information overload, I know I did! Please, also, if possible, ALWAYS take someone with you when you go to ALL your appointments and have them take notes, because you won't, I promise, hear half of what they tell you! I know I didn't. My brain tended to shut down....I had my husband and sister in law go with me every time, it makes a difference.


    I had a biopsy done in April.....I have stage II ductual carcinoma...stage II only due to the size 2.2 cm....I had sentinel node biopsy done during the lumpectomy on May 20......The surgeon got good, clean, clear margins and NO lymph node involvement, which is BIG....My surgeon who has been a breast specialist for 30 years said that from all the gathered information over the years that survival rates are no better with a radical mastectomy than a lumpectomy......I was also told that even with a mastectomy the cancer can come back due to the muscle wall that the breast is attached to and there is no way to TOTALLY remove all breast tissue.........I had 4 rounds of chemo Cytoxan/Taxotere and it wasn't nearly as bad as I thought it would be! No day at the beach but not horrible, tolerable and doable! I started radiation just this morning. First of 33 treatments. I want to do all I can to prevent this beast from returning and my oncologist believes in being agressive and doing all we can to avoid a reccurence. Again, don't let them rush you........

    Take good care......
    Nancy

    To Chemo or not to Chemo
    Nancy

    I just had surgery last month (08/09) to remove a 2.5cm tumor. Had mastectomy to remove breast - N0,M0 and wide clean margins. Stage 11, ductal carcinoma, grade 11, oncotype of 21. My Oncologlist said no radition, and quite possibly no chemo necessary as at this point I am considered low risk I don;t want to take chemo - looking for a compelling reason to do so, yet a 3% improvement (based on Oncotype score and other factors), is not enough of an improvement in odds for me to dose myself with chemicals (TC). Yes, Tamaxafin is a definate. Ive had the test to make sure my body will absorb it, and yes it will. But there is no way of knowing if stray cancer cells will respond favorably, although indications are good, since I am strongly ER and PR+, HER-. Getting nervous cause tomorrow I go in for my treatment consult. My gut is NOT to do chemo. I've had two opinions - they are split, although they both lean toward chemo as a "backup". But both agree that with only a 3% improvement in odds, it would not be unreasonable for me not to do chemo. just wondering how you made your decision as it sounds as if your DX was similar to mine. I will do the chemo for a 10%+ improvement...but neither oncologist can give me that margin of improvement with chemo AND tamaxafin.

    T
  • lanie940
    lanie940 Member Posts: 490 Member

    To Chemo or not to Chemo
    Nancy

    I just had surgery last month (08/09) to remove a 2.5cm tumor. Had mastectomy to remove breast - N0,M0 and wide clean margins. Stage 11, ductal carcinoma, grade 11, oncotype of 21. My Oncologlist said no radition, and quite possibly no chemo necessary as at this point I am considered low risk I don;t want to take chemo - looking for a compelling reason to do so, yet a 3% improvement (based on Oncotype score and other factors), is not enough of an improvement in odds for me to dose myself with chemicals (TC). Yes, Tamaxafin is a definate. Ive had the test to make sure my body will absorb it, and yes it will. But there is no way of knowing if stray cancer cells will respond favorably, although indications are good, since I am strongly ER and PR+, HER-. Getting nervous cause tomorrow I go in for my treatment consult. My gut is NOT to do chemo. I've had two opinions - they are split, although they both lean toward chemo as a "backup". But both agree that with only a 3% improvement in odds, it would not be unreasonable for me not to do chemo. just wondering how you made your decision as it sounds as if your DX was similar to mine. I will do the chemo for a 10%+ improvement...but neither oncologist can give me that margin of improvement with chemo AND tamaxafin.

    T

    Myself, I wouldn't do chemo
    Myself, I wouldn't do chemo for only a 3% improvement in odds. But that's just me. I don't know if I'll still have to do radiation, I was told I would after my lumpectomy, did you have a mastectomy? Your oncotype score of 21 is getting close to the medium range. My Medical Oncologist said I had a 30% chance of reoccurance in doing NOTHING.
  • roseann4
    roseann4 Member Posts: 992 Member
    I had breast conserving (partial mastectomy)
    Hi Kel,

    I did not see the oncologist until after my biopsy and surgery. My surgeon did the biopsy, ordered my MRI, CAT scan, and Bone Scan and gave me the results. She recommended breast conserving surgery as my tumor was 1.8 cmm and my breasts are not small. It was Stage 1 with no node involvement. What confuses me is why the surgeon is giving you advise on whether or not to have chemo or radiation. My surgeon left that decision to my oncologist but ordered an OncoTypeDX test which gives lots of info about whether chemo will be of any help. I was what they call low intermediate with a score of 18. I opted not to have chemo because it would only improve my odds of reoccurrance in 10 years by 3%. If you are early stage with no node involvement, you should ask for that test if your insurance will cover it. They usually do cover it because it could potentially save them the cost of chemo as it did in my case.

    I would get more opinions for such an impotant decision. Good luck. Believe me, it does get easier once the decisions are made.

    Roseann
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    Cat64 said:

    Hi Kel
    Welcome to the Board! Hearing the news you have cancer is devistating enough once,let alone having to hear it twice! What were you first diagnosed with?
    I would also suggest getting a second opinion, by another surgeon! Whether you have a Lump. or Mast.,there is still the chance for it to come back and I can't believe he said that! Read up on your diagnosis/treatments and gather all the info you can before you make your decision. Yes, it is YOUR decision. I would think you are getting two different stories because they are two different kind of doctors.
    This site will truly help you in whatever you need! Advice,hope,support,shoulders,ears,....24/7.
    Take a deep breath and go do something fun this weekend & try to relax!
    Hugz,
    Cathy

    Hi Kel50,I was diagnosed
    Hi Kel50,

    I was diagnosed about a month ago.

    I really cannot add to what has been said, just want to encourage you. Your mind is in a whirl and I'm sure overwhelmed with information.

    I had a good cry a few weeks ago and was talking to a friend because I was so confused, hearing one thing from my surgeon and another from my onocologist. I only had DCIS, but my surgeon was recommending that I have a bi-lateral mast. because of strong family history. My onocologist wanted to run more tests/scans first. And my friend pointed out that a surgeon cuts things; that is what they do. An onocologist is a cancer specialist. A surgeon most likely will opt for cutting. An onocologist, while they don't rule it out, is going to try other options first. Thinking about it this way really helped me to see why the surgeon was wanting me to get a bi-lateral masectomy and my onocologist was wanting to run more tests first.

    Hang in there! You're not alone in this fight!

    d.h.
  • trish53
    trish53 Member Posts: 2
    sorry Kel
    So sorry you have to go through this! I had a needle core biopsy in my left breast last Dec after I found lumps on left breast near nipple area, first mamo, then ultra-sound, then needle core biopsy rt near Christmas time I was scared to death...then results of that biopsy came back papalomatits(?) not cancer yet...but saw a general surgeon who had done the needle biopsy he recomended the lumpectomy anyway. Had that Jan/09, well I was not expecting bad news after that when I went in to get stitches removed, he tells me I will be back in after you get dressed I thought oh Gosh this cant be good?? Well it wasn't I was told I had DCIS intermediate grade. I too was blown away. He referrred me to a oncologist and he said if I had a masectomy I would be fine. No nodes need be done cause my type was a type that was contained within the ducts. I asked also about the nodes needing to be checked he said no. He then had a surgeon at his hospital do the surgury this last feb/09 they removed the sentinal node anyway & another because they were enlarged, they came back clear though. So no further treatment was done. I did not have reconstruction done I have MS also and my strength isnt too good I am 53, married 32+yrs so it dont matter to me about missing it that much or to my hubby. Younger women are differnet I am sure as we all are. I know I got alot of differnet answers from differnet dr;s too it is very confusing what to do. I wish the dr's could help one decide or all have the same plan...one never knows if they make the rt choice. I still am not sure since I have a lump now on my thoracic duct area I found after I was done with my oncologist last time in late march. Saw a gp dr, a surgeon 2x they say ifkeep a eye on it if it gets bigger or other symptoms appear. I guess it is hard not to be fearful of this c word once one faces it I hope you get good results dear! tc, trish