no primary tumour

gilli
gilli Member Posts: 18
edited March 2014 in Breast Cancer #1
I was diagnosed in January this year with breast cancer.

Two cancerous lymph nodes but no primary tumour. Nothing showed up in the breast itself, not even with an MRI and in fact I had had a routine mammogram and ultrasound scan less than two months before I found the lump below my armpit while I was in the shower one morning.

I had four AC chemo treatments and the cancer went. Then preventative radiation. No surgery at all.

Now on herceptin and tamoxifen.

Very keen to hear from others who have no primary tumour and the treatment they have had and how they are and... everything.

Comments

  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #2
    I don't know that I have
    I don't know that I have ever heard of this Gilli. Looks like you are NED now! So, congrats!

    HUGS
  • lizmair
    lizmair Member Posts: 24
    #3
    welcome I thought I was the
    welcome I thought I was the only one. Cancer was in my lymph nodes - no primary After a needle biopsy - which was incorrect, I had to remove lymph nodes to do a pathology to find out what kind of cancer it was. It was breast cancer cells. So now I will have four treatments of a/c and four of taxol. Please let me know what side effects you had with a/c I start on wednesday and am terrified. No one had heard of this - so I'm glad I have found someone else. thanks
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #4
    lizmair said:

    welcome I thought I was the
    welcome I thought I was the only one. Cancer was in my lymph nodes - no primary After a needle biopsy - which was incorrect, I had to remove lymph nodes to do a pathology to find out what kind of cancer it was. It was breast cancer cells. So now I will have four treatments of a/c and four of taxol. Please let me know what side effects you had with a/c I start on wednesday and am terrified. No one had heard of this - so I'm glad I have found someone else. thanks

    I have never heard of this
    I have never heard of this either. I wish both of you the best of luck with your treatment.

    Debby
  • gilli
    gilli Member Posts: 18
    #5
    dear Lizmair
    I forgot to mention in my post that my oncologist said 80% of cancers have no primary tumours.
    Well, re AC. I had four treatments and then my cancer went so then did not have any other chemo eg taxol. But I had radiation. The main and most obvious side-effect is that you lose your hair. Mine did not go completely - but it started falling out over everything so eventually I shared it off. I had completely no hair on the sides. I wore caps. I bought a wig but never wore it. If I remember correctly, my hair fell out about two weeks after the first treatment.
    I found the chemo made me feel weird - as in spacey - but I actually only threw up three times. I felt ill though. I used to take the day of treatment off work plus the following day. Then I went to work.
    It can lower your immune system and then if your blood counts are too low, you cannot have the next treatment. I found I did get ill in week two - or was it three? - after chemo but I was always able to have the treatment (counts did not get too low). I got mouth ulcers and thrush in my throat even though the oncologist said that was strange and not related to the chemo. But I survived and the most important thing is that it helps make you better - and that is what is important. I have a blog if you want to read more - gillian-fromundermyhat.blogspot.com but I am sure there are also lots of references to AC chemo on cancer.org
    Best of luck.
  • gilli
    gilli Member Posts: 18
    #6
    gilli said:

    dear Lizmair
    I forgot to mention in my post that my oncologist said 80% of cancers have no primary tumours.
    Well, re AC. I had four treatments and then my cancer went so then did not have any other chemo eg taxol. But I had radiation. The main and most obvious side-effect is that you lose your hair. Mine did not go completely - but it started falling out over everything so eventually I shared it off. I had completely no hair on the sides. I wore caps. I bought a wig but never wore it. If I remember correctly, my hair fell out about two weeks after the first treatment.
    I found the chemo made me feel weird - as in spacey - but I actually only threw up three times. I felt ill though. I used to take the day of treatment off work plus the following day. Then I went to work.
    It can lower your immune system and then if your blood counts are too low, you cannot have the next treatment. I found I did get ill in week two - or was it three? - after chemo but I was always able to have the treatment (counts did not get too low). I got mouth ulcers and thrush in my throat even though the oncologist said that was strange and not related to the chemo. But I survived and the most important thing is that it helps make you better - and that is what is important. I have a blog if you want to read more - gillian-fromundermyhat.blogspot.com but I am sure there are also lots of references to AC chemo on cancer.org
    Best of luck.

    so relieved to find someone else
    I cannot tell you how relieved I am to find someone else in the same situation. How did you discover the cancerous lymph? Was surgery ever suggested? Did you have an MRI scan to see if they could find the primary tumour? Did you feel at all ill? I didn't. Is your cancer hormone receptive?
  • gilli
    gilli Member Posts: 18
    #7
    gilli said:

    dear Lizmair
    I forgot to mention in my post that my oncologist said 80% of cancers have no primary tumours.
    Well, re AC. I had four treatments and then my cancer went so then did not have any other chemo eg taxol. But I had radiation. The main and most obvious side-effect is that you lose your hair. Mine did not go completely - but it started falling out over everything so eventually I shared it off. I had completely no hair on the sides. I wore caps. I bought a wig but never wore it. If I remember correctly, my hair fell out about two weeks after the first treatment.
    I found the chemo made me feel weird - as in spacey - but I actually only threw up three times. I felt ill though. I used to take the day of treatment off work plus the following day. Then I went to work.
    It can lower your immune system and then if your blood counts are too low, you cannot have the next treatment. I found I did get ill in week two - or was it three? - after chemo but I was always able to have the treatment (counts did not get too low). I got mouth ulcers and thrush in my throat even though the oncologist said that was strange and not related to the chemo. But I survived and the most important thing is that it helps make you better - and that is what is important. I have a blog if you want to read more - gillian-fromundermyhat.blogspot.com but I am sure there are also lots of references to AC chemo on cancer.org
    Best of luck.

    made an error!!! not 80%!!!!
    apologies - made a huge typo. Not 80% - but about 18% of cancers have no primary tumours but Lizmair is the first other person I have found!!
  • gilli
    gilli Member Posts: 18
    #8
    survivorbc09 said:

    I don't know that I have
    I don't know that I have ever heard of this Gilli. Looks like you are NED now! So, congrats!

    HUGS

    NED?
    What does NED mean?
  • Jadie
    Jadie Member Posts: 723
    #9
    gilli said:

    NED?
    What does NED mean?

    No Evidence of Disease

    No Evidence of Disease
  • chickad52
    chickad52 Member Posts: 497
    #10
    gilli
    I was also dx's in April with cancer in lymph nodes under left arm and no primary tumor.I had 4 rounds of A/C , then 12 treatments of taxol/herceptin and will be on herceptin for a year. I had a left mastectomy 2 weeks ago. The pathology report came back NED. I will start rads the first of the year. I'm glad to hear that I'm not the only one to have this type of cancer!! Hugs, Diane
  • gilli
    gilli Member Posts: 18
    #11
    chickad52 said:

    gilli
    I was also dx's in April with cancer in lymph nodes under left arm and no primary tumor.I had 4 rounds of A/C , then 12 treatments of taxol/herceptin and will be on herceptin for a year. I had a left mastectomy 2 weeks ago. The pathology report came back NED. I will start rads the first of the year. I'm glad to hear that I'm not the only one to have this type of cancer!! Hugs, Diane

    chickad52
    This is so interesting. Is NED no evidence of disease? Not sure what it means. Am fascinated that you had to have surgery and radiation. I was told to choose between the two, that each would have the same effect and then the surgeon who had first suggested left breast mastectomy told me not to have surgery as I had had a complete response to the A/C chemo. I also did not have to have taxol. But am on herceptin and tamoxifen (pills). Guess everyone is different. And oncologists too. Best of luck. Will be thinking of you.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #12
    gilli said:

    chickad52
    This is so interesting. Is NED no evidence of disease? Not sure what it means. Am fascinated that you had to have surgery and radiation. I was told to choose between the two, that each would have the same effect and then the surgeon who had first suggested left breast mastectomy told me not to have surgery as I had had a complete response to the A/C chemo. I also did not have to have taxol. But am on herceptin and tamoxifen (pills). Guess everyone is different. And oncologists too. Best of luck. Will be thinking of you.

    NED
    Gilli, NED is No Evidence of Disease! That is good! We all hope to hear that!

    Good luck to you!

    KYLEZ ♥

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