<p>I’m learning that this is not all that uncommon, but it was news to me. So I thought I’d poll the CCers and ask people to share any stories they’ve had with this since I know there are several cancer survivors (and family members of cancer survivors) on this board. </p>
<p>When we have people admitted to hospice, I don’t tend to pay a lot of attention to all the diagnostic tests, etc. that patients have been through. Now I’m learning that some of the diagnoses I’m seeing in people’s charts are just a best guess, after ruling out other cancers. So, for instance, a woman has all the diagnostic test to rule out ovarian cancer, but it is feasible that there’s a minute amount of cancer on an ovary, and it’s difficult to see on any imaging. But then it metasticizes to other organs without ever really testing positive on the primary site. So when this person is diagnosed with stage IV cancer, and it has invaded the liver, I may read a diagnosis of liver cancer on their chart, although the origin is likely somewhere else. Let me add, the person I’m referring to is being seen at one of the best cancer centers in the world (if not THE best), so I know every test available that can be run, has been.</p>
<p>Anyone else know of anyone who has gone through something like this?</p>
<p>I have not gone through that specifically, teriwtt, although I have had cancer (Stage II). I imagine if a cancer is not caught in its primary spot, and has spread through the body to other organs, that the docs, even the best, may have no way (currently) of knowing where the cancer originated.</p>
<p>Ovarian cancer, I believe, is particularly tough to catch early, so may metastasize before being diagnosed.</p>
<p>But as far as they can tell, it has not spread (if it has, it’s in such minute amounts it cannot be detected), but the liver is so heavily involved, that they are staging it at IV.</p>
<p>I think the desire to find the primary origin site is because that will determine which chemo might work best.</p>
<p>Cancer of unknown primary origin is not that rare in cancer world that it is considered a freak thing, but it is fortunately not common. Yes, I 've heard of this. The problem is exactly what you state: finding the best chemo and other treatment that would work for it. Sometimes they cannot find out what the source is, and have to guess. There are tests these days that can give a list of substances to which the tumor is most susceptible and that can help too.</p>
<p>Sometimes it’s easy to tell, because at the cellular level the tumor still retains many of the characteristics of the tissue of origin. And the pathologist can rreadily ecognize and identify it. But some cancers regress to a more embryologically “primitive” form, making it much harder to identify.</p>
<p>Yes, and someone I know recently died without knowing the primary origin of the cancer. The patient had a neurological disease. He had trouble swallowing one day and thought it was due to his diagnosed neurologic/ non-cancerous disorder. He went into the hospital, was admitted for testing and treatment, and soon after slipped into a coma. He had cancer in his abdomen, brain, lymph nodes, and esophagus. The primary site was unknown and the patient did not even know he had cancer because he went into a coma before it was found. He had a regular physical exam not that long before, btw.</p>
<p>My brother-in-law died of brain cancer at age 51. They were never able to pinpoint the primary origin of his cancer. He was a heavy smoker, but his lungs were clean.</p>
<p>A good friend of mine died at age 50 having had “cancer of unknown origin” for 4 years. Her younger sister died of breast cancer (just diagnosed 4 months prior to death) 6 months before she did and her husband died of colon cancer 3 years after that. Too sad.</p>
<p>Metastatic carcinoma of unknown primary is more common that you might think. It is usually an adenocarcinoma. It is usually undifferentiated so that the primary organ cannot be determined by its cell type; ie, the examination under the microscope does not give clues to its organ of origin. I believe Jim Valvano of NC State basketball fame died of adenocarcinoma of unknown primary. It was reported that it was bone, or testicular. But I am quite sure the primary was unknown, and he gave this type of cancer a “face.”</p>
<p>Like I said, I don’t always look at a patient’s history when I meet with them or the family; I usually rely on them summarizing to me what they’ve been through. Many of the diseases are abbreviated in our computer charting, and I guess that yes, I’ve seen some that adenocarcinoma NOS, but I never knew what the NOS stood for. </p>
<p>I would have to think that having adenocarcinoma NOS makes it more difficult to treat because if you don’t know what the site of origin is, you are challenged in picking the best chemotherapy.</p>
<p>Suunyfla is exactly right. Carcinoma of unknown primary is not uncommon. There are several scenarios where a patient might get this diagnosis - widely metastatic tumor where a person is in extremis at time of presentation, multiple tumors in the lung and/or liver where one lesion might be the primary, but no one lesion is large enough to be identified as the primary, advanced tumors that have “lost their markers” and don’t produce the staining profile we would expect. Despite many advances, only a few tumors have pathognomic markers, that is markers that are always positive, and even those can have rare cases where the marker doesn’t work. What we try to do (I’m a pathologist) is exclude the more treatable cancers - lymphoma, breast, colon, ovary, lung, kind of in that order. If we can’t identify a tumor as being one of these, then chemo is not going to work very well (doesn’t work so great in lung anyway), so the oncologist gives the patient the most likely treatment, and often the less toxic treatment.
NOS = not otherwise specified.</p>
<p>Cangel - thank you for your honest interpretation. This is actually my 57-year old sister-in-law, and I am trying to get a handle on what the prognosis is. Although I didn’t say this to my brother, I, too, wondered how they can pick the most effective chemo. She has already had round one, and it just didn’t seem to make sense to me to start chemo without knowing where the primary site is. However, from what I’m reading and learning, this is not uncommon, so there must be some sort of protocol for how to best approach the treatment. But it makes complete sense that if you can’t identify the tumor as being one of the ones you listed (yes, they ruled all those out), then chemo probably won’t work very well. This will be hard on my brother (he and his wife never had kids, and her only sibling died almost ten years ago), and I’m just trying to read between the lines of information he has given me, without questioning so much that it seems like I’m doubting the choices they are making. Since I am employed with hospice, I also don’t want my experience and offer of support to come off as suggesting that I think she’s ready for hospice. But I am trying to prepare myself for the strong possibility that I will need to travel down there to help at some point. As I said earlier, she is being treated at a major cancer center (M.D. Anderson), so I feel confident that anything feasible that can be tried, is being tried.</p>
<p>TERIWTT, there are actually protocols for adenoca NOS or of unknown primary. While they may not be curative, they can result in remission and buying time, usually quality time. Oncologists are familiar with these protocols. There are first and second line protocols. She is in good hands at MD Anderson, and they have treated scores of patients where the primary could never be identified.</p>
<p>Sometimes it is primary peritoneal cancer, which acts like ovarian but is not ovarian and does not exactly have an organ of origin other than the peritoneum, which is a covering of organs and not an organ itserlf. The prognosis for either is guarded, but they will have another treatment plan if the cancer has not responded to the first line of therapy.</p>
<p>I knew someone where they never found the origin. The details escape me but somehow the doctors were sure it was a malignant melanoma – but they never could find the original tumor that should have been somewhere on the skin. This person survived.</p>
<p>Thanks to all the posters here who have shared. Like I said, I think this was just such a revelation to me that I wondered how in the dark I was. One of our nurses at work that I had a chance to speak to yesterday thought she’d heard a percentage of around 10% of cancers not being able to be pinpointed to their primary site. I just didn’t realize this.</p>
<p>I spoke with my brother yesterday, and she had her first round of chemo on Thursday. As of yesterday, she hadn’t had any negative side effects of it, so they’re encouraged that that’s one less problem to worry about (what they are concerned about at this stage are her blood chemistry levels, particularly potassium, calcium, and a couple of others).</p>
<p>Sunnyfla is correct, there are protocols, which basically mean that the tumor will be treated based on certain assumptions - location of the metastases, age and sex of the patient, etc. The protocol will involved the same drugs used to treat known primaries, perhaps will some small alterations to help cover the “what if” the primary is not the most likely choice. MDA will be very familiar with this situation, many patients get referred to them for this very problem. They also have ready access to the most up to date markers, and they review all pathology so be assured that your SIL has had a thorough work-up. The prognosis for metastatic carcinoma is always very guarded, and this is usually not a curative situation, but depending on the clinical situation the therapy may be more or less aggressive.
If your SIL has primarily tumor in the abdomen, then the primary peritoneal carcinoma that Sunny discussed is a likely candidate, although it is not a common tumor. This is how it often presents, with no definite primary location.</p>