New Here and Node Positive

Kimberlyry
Kimberlyry Member Posts: 10
edited March 2014 in Breast Cancer #1
Hi, Just wondered if anyone out there has had a similar experience. I was just diagnosed 7 weeks ago. Had 2cm tumor that was biopsied. Right after the biopsy a lymph node under my arm started to hurt all the time. I knew the cancer had spread but my surgeon and oncologist just said, "oh those darn biopsies" as if my node was just reacting to the procedure.??? After an MRI they wanted me to do another ultrasound to look again. They biopsied the node and it was positive. The surgeon never saw the report until the day before my bilateral mastectomy (my choice) was scheduled. She called and said, we have to do chemo first. It was a total mind spin and my whole life was completely disrupted but I was on board with the new treatment plan. I understand that if it's already in my blood lets hunt it down and kill it systemically first, not wait around two more months healing from surgery. So I started chemo ( C/T 4 treatments every other week then Taxol 4 treatments every other week = 4 months total) last Friday.

So my concern is....I have new pain under my arm and I feel like there is another node growing a tumor but I don't know how to get my oncologist to listen to me this time. I want to get a new ultrasound to see if there is something there and if so maybe radiation too. I know radiation at the same time as chemo is really hard on the body, but I am up for whatever is going to kill this sucker. I just get such a sick feeling every time I feel that pain under my arm - just like before.

Anyone else had any luck getting another ultrasound scan during chemo??

Thanks for listening. It's so nic eto know there are other people out there who get this. I feel very alone most of the time.

Comments

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #2
    Hi and welcome to the board
    I'm sorry for the reason your here. But glad you found us. You will get all the support you want and need. The ladies here are the most wonderful on this earth.
    Am I reading right that you are doing chemo first then surgery and rads. That is what my treatment regime is and it is working very well. What makes you think the cancer is in your blood. Mine was in the breast and nodes but has not spread any place else.
    In my opinion if your Dr don't or wont listen to you maybe you need another Dr. They can do scans during chemo I had a Muga scan right in the middle of chemo. You've had one chemo right. The tumors should start shrinking. I wish you all the best. And you will be in my prayers. take care Kay
  • carkris
    carkris Member Posts: 4,553 Member
    #3
    smalldoggroomer said:

    Hi and welcome to the board
    I'm sorry for the reason your here. But glad you found us. You will get all the support you want and need. The ladies here are the most wonderful on this earth.
    Am I reading right that you are doing chemo first then surgery and rads. That is what my treatment regime is and it is working very well. What makes you think the cancer is in your blood. Mine was in the breast and nodes but has not spread any place else.
    In my opinion if your Dr don't or wont listen to you maybe you need another Dr. They can do scans during chemo I had a Muga scan right in the middle of chemo. You've had one chemo right. The tumors should start shrinking. I wish you all the best. And you will be in my prayers. take care Kay

    Welcome to the board, sorry
    Welcome to the board, sorry you are here. Everyone is really wonderful and will help you get through. Sometimes it is the type of tumor that makes them want to do chemo first. node positive is not the kiss of death, many people are node positve and do well. Hugs
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #4
    I'm right there with you...I
    I'm right there with you...I was told surgery next week, meet the surgeon on Friday. Then I met the surgeon and he said chemo first. And even though it's the right treatment for my pathology, I took an instant dislike to him (because chemo was more scary than surgery to me) and now have another surgeon. Surgery will be sometime in Jan.

    I haven't asked for any additional ultrasounds yet. But I see my onc on Thursday, and will be asking then. (It feels like nodes on the right are involved, and my BC is on the left.) I fully expect him to say "but there's nothing on the MRI". Still, I need to get it done for my peace of mind. I'll let you know what happens.

    What exactly is the onc's objection to another ultrasound? And does the onc or the surgeon plan to do another ultrasound before surgery? I ask because if another node is involved, would it change your treatment plan? Another node involved might only change the extent of your surgery, or the extent of your rads...it might not change your chemo at all. I guess I'm reminding you that you have some time to continue this discussion with your docs.

    Also, the new pains might be your existing nodes responding to the chemo. I had a 4cm node that was difficult to find after the 2nd round of chemo. I've now had 4 of 6 rounds of TAC, and still have pains similar to the original pain. I hope all of this helps.

    You've come to a great place...you'll get lots of compassion and support. And hopefully you won't feel so alone anymore.

    Hugs,

    Linda
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #5
    Gabe N Abby Mom said:

    I'm right there with you...I
    I'm right there with you...I was told surgery next week, meet the surgeon on Friday. Then I met the surgeon and he said chemo first. And even though it's the right treatment for my pathology, I took an instant dislike to him (because chemo was more scary than surgery to me) and now have another surgeon. Surgery will be sometime in Jan.

    I haven't asked for any additional ultrasounds yet. But I see my onc on Thursday, and will be asking then. (It feels like nodes on the right are involved, and my BC is on the left.) I fully expect him to say "but there's nothing on the MRI". Still, I need to get it done for my peace of mind. I'll let you know what happens.

    What exactly is the onc's objection to another ultrasound? And does the onc or the surgeon plan to do another ultrasound before surgery? I ask because if another node is involved, would it change your treatment plan? Another node involved might only change the extent of your surgery, or the extent of your rads...it might not change your chemo at all. I guess I'm reminding you that you have some time to continue this discussion with your docs.

    Also, the new pains might be your existing nodes responding to the chemo. I had a 4cm node that was difficult to find after the 2nd round of chemo. I've now had 4 of 6 rounds of TAC, and still have pains similar to the original pain. I hope all of this helps.

    You've come to a great place...you'll get lots of compassion and support. And hopefully you won't feel so alone anymore.

    Hugs,

    Linda

    Welcome
    I cannot add much but wanted to welcome you. I did 4 rounds of TC and did well with it. You have found a great place with wonderful people who will be able to help you out. God Bless
    (((Hugs))) Janice
  • 24242
    24242 Member Posts: 1,398 Member
    #6
    Pains
    I was diagnosed with stage 3 and 11 out 21 positive nodes and that also was 14 years ago for me. I had a tumor in breast that was dx'd as fibrous cyst though my health had been failing me for years. Sore hips and exhausted then moved and seemed to always be sick with something as well as working at the most physical job I had done in more than 15 years.
    One gets tired of being sick and tired and pain seems to be thing that truly makes our body and mind take note. I had to have a second lump that grew in one week and I found it the size of a pea and in 6 days it was a golf ball.
    Still less than 10% chance any of it could be cancer. I knew in my soul something was terrbily wrong but no never cancer. I still have pains in both arm pits that are sharp stabbing and then they go away. I guess this is still side affects from sentinal being touched on second side. I also had one mastectomy at a time on advice from my nurse mother. No chemo before surgery but had six rounds after surgery and healed. I have learned to live my life with quality and don't let things pass if something is bothering me or feeling ill for months One has to face fears and do it anyways and doctor visits aren't easy. How often do you feel like they are looking right through you and often some where else.
    I have recently had a nother lump grow in lumph node and another mass they still figure is fat so now I have to learn to live with the benign lump in me and the other mass because surgery could cause more than it cures at this point in my life and working is much more appealing than laying around healing something I don't think anyone can get use to.
    I have found lots of things that are the matter with me and it just made it concrete that I do know my body but sometimes we also have to let things go because I am not a doctor and nor do I want to be one. I think we all have to remind ourselve's that we have souls and learning to listen to them is an amazing life key.
    I found this second time around much worse because there is thing called the cure attached to everything given in treatments. My doctor was dumb founded why I would think it was breast cancer in my arm. WOW is all I could say knowing the likely hood of breast cancer was very low since removing my breeasts and doing all the treatments there were even if at a low percentage of adding years. I was young 36 at the time and 50 has been a very good years...
    You are not alone and women care here.
    Tara
  • Kimberlyry
    Kimberlyry Member Posts: 10
    #7
    THANK YOU ALL!!
    Thank you all so much!! It is so helpful to know that others have been there. I have a lot of medical background so I understand all the biology stuff, but I don't know that much about breast cancer. I don't know about all the test and treatments to ask about but I know I will learn a lot here. I was an infertility patient for years and learned more from those discussion boards than from any doctors.

    I should note that I am not a big computer nut so please forgive me if I don't always respond quickly. I also have severe dyslexia so typing is hard for me. It takes me longer to fix my mistakes than to type a message.

    Off to the Dr. tomorrow with my list of questions and request for an ultrasound.

    All the best, Kimberly
  • ff
    ff Member Posts: 1
    #8
    24242 said:

    Pains
    I was diagnosed with stage 3 and 11 out 21 positive nodes and that also was 14 years ago for me. I had a tumor in breast that was dx'd as fibrous cyst though my health had been failing me for years. Sore hips and exhausted then moved and seemed to always be sick with something as well as working at the most physical job I had done in more than 15 years.
    One gets tired of being sick and tired and pain seems to be thing that truly makes our body and mind take note. I had to have a second lump that grew in one week and I found it the size of a pea and in 6 days it was a golf ball.
    Still less than 10% chance any of it could be cancer. I knew in my soul something was terrbily wrong but no never cancer. I still have pains in both arm pits that are sharp stabbing and then they go away. I guess this is still side affects from sentinal being touched on second side. I also had one mastectomy at a time on advice from my nurse mother. No chemo before surgery but had six rounds after surgery and healed. I have learned to live my life with quality and don't let things pass if something is bothering me or feeling ill for months One has to face fears and do it anyways and doctor visits aren't easy. How often do you feel like they are looking right through you and often some where else.
    I have recently had a nother lump grow in lumph node and another mass they still figure is fat so now I have to learn to live with the benign lump in me and the other mass because surgery could cause more than it cures at this point in my life and working is much more appealing than laying around healing something I don't think anyone can get use to.
    I have found lots of things that are the matter with me and it just made it concrete that I do know my body but sometimes we also have to let things go because I am not a doctor and nor do I want to be one. I think we all have to remind ourselve's that we have souls and learning to listen to them is an amazing life key.
    I found this second time around much worse because there is thing called the cure attached to everything given in treatments. My doctor was dumb founded why I would think it was breast cancer in my arm. WOW is all I could say knowing the likely hood of breast cancer was very low since removing my breeasts and doing all the treatments there were even if at a low percentage of adding years. I was young 36 at the time and 50 has been a very good years...
    You are not alone and women care here.
    Tara

    Hello

    i know this is a Long ago comment. Just checking how you are doing and if all the pain is finally gone

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