Scared,T.N with unknown primary CUP!!!

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snowyday
snowyday Member Posts: 1,478
Scared,T.N with unknown primary CUP!!!

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  • snowyday
    snowyday Member Posts: 1,478
    edited March 2008

    I scared the heck out of myself the other night and I'm still sort of putting it out of my mind.  On my path report it also said Carcinoma of Unknown Primary. Well I didn't think much about it because at the hospital they all called it breast cancer. But then I re-read my path report and looked up unkown primary.  Apparently only 3% of cancers are of unknown primary I stopped reading after the third paragraph.  So I'm triple negative apparently only 15% of us are then I've got the unknown primary only 3% of cancers have this. So does anyone else know anything about this.  I've been having bowel problems and they diagnosed tumours on my liver way back in June as well so now I think I better get educated because I have to do some yelling for more scans etc.  I'm scared, any info out there.

  • wishiwere
    wishiwere Member Posts: 3,793
    edited March 2008

    Gosh, Snowyday, I have no idea.  I knew that sometimes breast cancer can be the secondary, but do you mean, you were tx for breast cancer before, then this liver report is where you read unknown primary?

  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited March 2008

    I notice in your signature that there is no result for nodes. Does this mean that your breast tumour and SNB were not removed after they discovered you were Stage IV, that they just went straight into treatment for the mets? If so, that could result in a notation of CUP, but no doubt as to it having been breast cancer. They just never did a full evaluation of the primary tumor.

    Hope everything gets straightened out

    {{{hugs}}}

    Lisa

  • snowyday
    snowyday Member Posts: 1,478
    edited March 2008

    They did a SNB but found nothing there and that was also something common with unknown primary. I guess I'm just going to have to pull up the articles and start reading. I think it just scared me so badly I wanted to hear from someone else with the same thing that has been on the boards a few years.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2008

    Snowyday,

    How D*** confusing...Send a email to Tenderinthenight under member list and see if she can help you.  This lady has incredible knowledge.  Maybe she can show you where to start asking questions and getting info.

    Keep us up to date with what you find out.  I'm praying that you get some answers soon.

    Living in hope,

    Flalady

  • snowyday
    snowyday Member Posts: 1,478
    edited March 2008

    YOur right she might know, she know everything. Thanks I;ll do itl. Pearl

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2008

    I thought Tender was taking a break from the board.  She may not answer.

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited March 2008

    I thought Tender's break was over!  At least, I hope so!!!!

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Hi Ladies,



    I sent you a pm, Pearl.



    I am so sorry for your recent anxiety stirred up by looking at your pathology report. They're dreadful to read, aren't they, pertaining to ourselves, so upfront and in our face?



    As are you and the other ladies, I find it puzzling that you were told you had breast cancer and treated for breast cancer, and when you pull out your path report after an appropriate absence, you see the entry unknown primary. I take it it says, something like, adenocarcinoma (glandular carcinoma) unknown primary. This is an entry made when the pathologist might not be able to distinguish the organ of origin for any number of reasons. But they can distinguish that it's a glandular organ, which is important, and on which your chemotherapy selection was undoubtedly based.



    Like you, the puzzle pieces which seem missing are what your doctors subsequently found on looking at your pathology tissue to warrant their decision that this is breast cancer. With breast cancer being so common, most pathologists/oncologists/surgeons must rule in or out the breast as a source when they initially determine adenocarcinoma of unknown origin. In your case, having been told it was breast cancer, it appears this is what took place. Perhaps they later obtained an expert second pathology opinion (common in difficult cases) as well as special histologic stains, or even newer molecular and enzyme studies.



    I know in the flurry of treatments, and ongoing pains and fatigue, I have not understood certain points when reviewed. You are right, Pearl, to try to get a better understanding now of the basis on which your oncologist confirmed you had breast cancer.



    All of this, on top of your ongoing GI problems, and recent difficulties are an awful lot for a woman to handle alone. You're tired of feeling sick, and miss the good old days when fatigue was from a physical or mental exhaustion, and not a sick exhaustion. I'm just wondering if you and your doctors might talk about some social services which may be available to you that as yet, have not been applied to. Would you consider reaching out to the local American Cancer Society membership, to see if they may help you with interfacing with your doctors, as well as personally. This is what people living with cancer do for one another, and such help is offered with a willing heart.



    We can offer you our Sisterhood, Pearl, and thank goodness for that. Many genuine voices posted to you of late over concern and we will remain here for you to reach to. Please do check in either privately or otherwise to let a sister(s) know how it is going for you daily, especially since you're going through an active GI evaluation, which is so stressful on us to go through.



    In terms of your treatment, I can only suggest that you speak with your oncologist obviously for clarification. However, knowing your breast tumor was an adenocarcinoma allowed him or her to select chemotherapy which is known to be effective against this type, so I think you can rest some on this point.



    We're all pulling for you, Pearl. Please keep posting, and try to get this GI evaluation further discussed and scheduled so you will have some answers. We're hoping this will lessen your very overflowing plate.



    Sending warmth and support your way,

    Tender

  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2008

    Pearl, Pearl, Pearl...feel my big and o so gentle hug surrounding you wih love and warmth and strength my sister...i holdyou in my arms andmy prayers and my love this day...please, please keep posting my sweet...we, I am here for you...

    love,

    Holly

  • celia088
    celia088 Member Posts: 2,570
    edited March 2008

    Pearl,

    I am sorry that i don't know anything about your pathology report and can't help with that, but just wanted to let you know that i am thinking about you. I read your thread about your GI problems, and i am a bit worried that you are freaking out and perhaps this stress is making your GI problems more acute.

    One time i got a copy of the MRI done of my spine and because i could not understand any of the medical terms in it, i googled each of them one after the other, but not in context with each other.  All i accomplished was that I scared myself witless by doing that.  So remember, try not to over-read or over-interpret what your path report says.  If i understood correctly, it seems that Tender was saying that the doctors had interpreted your path report as breast cancer.  Anyway, you should call your onc or other doc and ask more about this.  I want to wish you the best of luck.

    celia 

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2008

    Tender,

    Thank you for being the light in our darkness...

    Hope you are doing well...Thank you for coming back to us.

    Flalady

  • snowyday
    snowyday Member Posts: 1,478
    edited March 2008

    Everyone thank you so very much for the support, I am freaked right now and know I have to get to the bottom of my path report and what is going on with bowels and liver.. Holly your post was beautiful, thank you, and tender thank you for your knowledge and guidance, Celia I too wonder if I don't scare myself to much at times. I believe the underlying concern for me is not getting my energy back and I understand it takes time but I really thought I'd feel more back to the normal afte chemo and rads.  Unknown primary scares me alot and I have to get my complete file to understand what is going on and what hasn't been taken care of. I'm the type that bounces back easily, I went back to work two weeks after major back surgury, and three days after a hernia operation so I expected more from myself.  And this might sound stupid but I really feel like something is still wrong, badly wrong and I'm not being treated for it.  Tender I'm so glad that your back on the boards you have no idea, we all are. If I didn't mention anyones name I aplogize in advance I am moving myself today and am tire and have to get back to finishing up.  It all takes twice as long as before and I need to get as much of the small stuff upstairs or packed before the help for the big stuff comes tomorrow. As soon as I find out more I will explain it to you all (if I get it that is).  You are all such a support and I pray hard for each and everyone one of you out there.  I can't imagine what my mental frame of mind would be without your support, kindness and hugs. Big fat hugs to you all. Thankyou  Oh yes and tonight I hope your all going to turn off the lights and power supplies from 8 until 9 for earth hour.  Between the environment and extinction of animals I pray that as humans we can all get together to save our planet.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Pearl......hoping you get the answers you need and get settled in your new home quickly. Thinking of you. Viv

  • celia088
    celia088 Member Posts: 2,570
    edited March 2008

    Pearl,

    With all you that have going on in your life with bowels, colonoscopies, path reports, stress, and also MOVING, which means packing and organizing---no wonder you are so fatigued!!!  Besides that, lots of oncs say that after treatment it takes a minimum of the same amount of total time you were in treatment, to get somewhat better from the effects of treatment.  So if your tx (chemo and rads) took 8 months, then you need at least 8 months of time after tx to start to feel better.  It really is a slow process.   Bouncing back after a surgery is probably easier than after bc treatment.

    I hope you get settled in your new place quickly and can relax a bit.  i am praying for you for good news.

    hugs,

    celia 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited April 2008

    Pearl -- please let us know how you're doing!

    Ann

  • celia088
    celia088 Member Posts: 2,570
    edited April 2008

    just checking in to see how Pearl is doing......thinking about you!

  • zarowny9
    zarowny9 Member Posts: 328
    edited April 2008

    Pearl,hugs and good luck,please let us know how you are.....Dawn

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