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Occult cancer

graciejamie12
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I have been diagnosed with what is known as an occult cancer. They think it is breast cancer due to the make up of the cells but although it has spread to my lymph nodes which is the secondary source they cannot find the primary source. I have had numerous mammograms and every scan there is to have but they still cannot find where the primary source is in my breast. I have now had all my lymph nodes removed and have just had my first dose of chemotherapy (FEC) I will then have radiotherapy followed by one year of herceptin as my cancer has come back as Her 2 positive. This has been a nightmare from the start as it has been going on since April trying to find the primary source. I just wondered if anyone else was in a similiar situation.

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    Hi Amanda, I don't have the same problem as you, but thought I would respond, if only to bump your post to the first page in hopes that someone who can relate will respond. No wonder you are having a hard time in coping with this diagnosis when they don't seem to be able to pinpoint the primary source. Having a cancer diagnosis is bad enough; certainly more so when so little is known about it. I hope they discover the primary source soon, so that you can get on with your treatment with some measure of confidence.

    My reply should bounce your post to the first page and hopefully, you will hear from someone soon. The other thing you could try is posting in the category "Ask the Nurses" here on the forum. Perhaps they can be better able to give you an explanation. Or, if you're in the UK, you can phone them during business hours at the phone number listed at the bottom of this page.

    Come back on to the forum to let us know how it goes for you and to get some support from others on here. Even though there may not be anyone in the same situation as you, all of us are dealing with cancer in some way.

    Take care and good luck with your treatment.

    Lorraine   

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    Hiya Gracie and a warm welcome.  I am sorry you are going through so much. Just wanted to say that if you type  Unknown Primary into the search forum button at the top of this page (on the purple strip) many threads will come up from postees going through a similar situation to yourself.  I have just had a look and there are some pretty recent posts if you wade through them all.  Maybe you could post on a more recent thread and introduce yourself to others there.  Good luck x

  • Offline in reply to LorraineD

    Hi Lorraine

    Thank you  so much for your kind reply, it has given me a boost I needed. It is hard when you know you are having the chemo but they are guessing to a certain extent where they are treating. However I'm determined to stay positive as I think that is half the battle. I will do what you suggested and thank you again.

  • Offline in reply to max56

    Hi

     Thank you so much for your reply and the very useful info you gave me. I will do as you suggested and thanks for taking the time to look for me.

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