Bone and Pet Scan Clear but No Primary Tumor

Had appointment with oncologist today. Bone and Pet scan was clear except a small spot right by my collar-bone on the left side. Oncologist met with my surgeon that removed my cancerous lymph nodes and they decided that I should have a mastectomy of the left breast, reconstruction if I choose and then start chemo and radiation after that. Said, there was no sign of a tumor in my breast. Well, as of this minute, I am free of cancer because all the lymph nodes were all removed.  The problem is that the primary tumor is missing, or has never been present large enough for physical examination or for even the pet scan to show. They still have to test my pathology reports to find out if I’m hormone receptor positive and I may not be saying that right so correct me if you know on this one. A lot depends on this test and why has it not been done yet? I have no idea and the oncologist doesn’t either so he is going to take care of that tomorrow. After the initial shock of just going into that office and hearing once again the word cancer, chemo, losing my breast and hair have on me, I start thinking …wait a minute, if I have no primary tumor, then why do I must have the removal of the breast. If it’s that tiny, shouldn’t the chemo take care of this as well as the tiny lymph node problem by my collar-bone? Shouldn’t I get chemo first and radiation before any cutting more is done on me? In fact, I went to Memorial Northwest Hospital with their cancer specialist in a conference panel. This group of Doctors, oncologist, radiologists thought and this is without seeing any of my reports, I should have chemo first, radiation and then surgery if needed. The oncologist there was a grandfatherly type, been in business for 35 years, very comforting in his knowledge and he takes Medicaid…I got his card and going to seek a second opinion. I do like my two doctors that I have now but I really don’t want to lose my breast if at all possible. Just, the reconstruction surgery that I wish to get is an 8 hour operation alone and its done at the same time the mastectomy which I haven’t found out how long that one is…it totally freaks me out to be unconscious for that long. And I found out since my problem is on the left side, the radiation can affect my heart and I could developed heart disease, heart attack and my heart is already compromised from a birth defect…ain’t this some shit…. They keep telling me that this is not a normal case…that is not comforting at all and just like pregnancy, menopause, no two breast cancer patients are alike…no two treatments are alike. I just want to sit and have someone else make all these decisions for me, I’m tired, I’m confused and scared of making the wrong decision. Oh, yes, I will pray over it and think about it and ask one million questions but I don’t want to have any what if’s…having dense breasts is something I found out tonight that a younger woman has, older ladies, like myself usually the breasts become less dense with age…mine are as dense as they were at 20 which makes this whole case more difficult because they can’t see the smallest tumors. I spend hours online researching, making phone calls for appointments, then going to doctors, crying takes a lot of time too and you cannot help but cry to release the anxiety. He gave me something for the anxiety that I experience but all it will do is numb me and make me groggy…I think I will stick to medicinal methods, at least I know how that makes me feel and I recover and am not groggy for the rest of the day…a non functioning person.

Do you are anyone out there have a similar situation or know of someone who has had a missing tumor with breast cancer…? If you do can you tell them to contact me if they would talk to me? Non primary tumor, it’s called. Hello, leave to me to have a weird body or shall I blame it on my Mother?

I’m exhausted and to top everything off, my a/c now does not work, the fan won’t even come on and there is a light on my dash that says service lit up… on my new car…I just can’t take much more….

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6 Responses to Bone and Pet Scan Clear but No Primary Tumor

  1. Mitch Cohen says:

    I’m so glad you went to that talk tonight – get that second opinion. Peace of mind is very important, especially if there is an option to prevent more surgery.

  2. Cindy Peterson aka Cindy Lou Who says:

    Hey Sam, Got your text today but was tied up with stuff until late tonite. I will call you tomorrow afternoon late. But just want to explain this to you now. Once it has spread to the lymph nodes it is basically already in your entire lymphatic system and blood stream in microscopic amounts looking for an opportunity to settle somewhere else. It could take years or if you really make a drastic change to lifestyle and foods it could be never. The lymph node near your collar bone is concerning. Anytime it has spread to lymph nodes they do chemo. The pathology will tell them a lot about it, estrogen receptive or not, how aggressive it is growth wise and help them determine what drugs to use. I expect that they are suggesting radiation to zap any thing that they can’t see. Did they do an ultra sound as well as mamogram? Dense breasts are a problem. That’s what happened to me. Younger women and those who have not nursed babies are more likely to have dense tissue. I had yearly mamograms from the time I was 35. The tumor I had was huge and embedded in my chest wall but they could not see it at all on mamograms but it was clearly there on ultra sound. I was diagnosed at 43 and doctors said it was probably growing for about 10 years. As I tell you all this REMEMBER that I was a stage 3c at diagnosis 12 years ago….I have been stage 4 with mets to bone since 2006 and currently with mets to lungs for over a year and honey I AM STILL HERE!!! I said all that to let you know that even though you are going thru a personal hell right now and it’s very difficult and scary….YOU WILL BE OK. I will talk to you soon!
    love ya!
    Cindy P

  3. Shelby Smith says:

    Sam,
    I am assuming there is someone with you on all these visits. If there is not, you need an advocate, someone who can help you sift through all this information. I think a second opinion is good, but you still need someone with you. When you get a chance, come back to Cherapa and spend more time in nature. That can help restore your energy and regain your composure.

    • Shelby, I was just chatting with Robert online and then got your comment and he was telling me the same thing…nature…it does help…makes me not think about me…clears the cobwebs…and I do have someone going with me…my girls won’t let me go alone…I have a few ladies in my court…Thank you so much for the invite….sam

  4. helene says:

    How about a third opinion? The billing staff sucks, although when other drs. cannot figure out cancers , they go to MD for it. MDACC would get this issue solved and would see with their equipment the microscopic tumor if there is one. Unknown primary is a different animal. It may never be found .. usually it is though. Cell type – very stange ones out there .. Did you know: there are bone cells that settle in and become primary breast? Call EuWings Sarcoma did you know: Cindy Lou Who knows what she talks about! … when they stand still and do nothing — they know NOTHING and are guessing. ….. I beg you, go there …. try again ! Won’t hurt cause you will have to wait – so do your think, but let them look at the reports … films, etc.

  5. anne carillo says:

    Cindy Lou & Helene are smart. As a retired R.N., I can’t help but wonder if the treatment modalities should be very much as those for primary lymphoma; with the exception being if that it is some sort of bizarre primary breast cancer, a therapy that also treats the hormonal component. I am not an ocology nurse; but I think most breast cancers are driven by estrogen.
    I do not want to bombard you with unsolicited advice; but knowledge is power. You are a really smart woman, & it looks like you’ve got some smart friends.

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