Discussions By Condition: Cancer

cancer unknown primary

Posted In: Cancer 11 Replies
  • Posted By: Anonymous
  • April 17, 2007
  • 06:25 AM

My husband was diagnosed as having cancer of unknown primary. This was discovered because he had malignant ascites and biopsy showed adnocarcinoma, undifferentiated. The ascites caused his abdomen to swell like he was nine months pregnant. He became so ill he was bedridden, on oxygen, had to use a wheel chair, and went down to 134 pounds on a six foot frame. He was then started on chemo, and has made remarkable progress. He walks, drives, and even works at the golf course twice a week. His chemo is not curative, but the doctor said it will buy him some quality time. He is up to 156 pounds. He is fighting this so hard. His primary doctor told me he has 3-6 months to live, with or without chemo, and I thought I heard his oncologist say very quietly he might have a year with chemo. Cancer of unknown primary occurs they say in 3-5% of cancer cases. I also gave my husband a pill called Paw-paw, and melatonin to ease the chemo symptoms. I think the doctors are pretty amazed that he is doing as well as he is.

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11 Replies:

  • Wow, that's heartbreaking but it's excellent to know that your husband is still enjoying life and doing the things he loves! If he is in high spirits and gaining back some of the lost weight then that is definately a good sign. While the two of you shouldn't get your hopes up with unrealistic expectations, don't assume the doctors are correct with their life-span estimate either. No one can truly assess how long a patient will last in a situation like this- sometimes it's what the doctors say, sometimes the patient defies medical explanation and lives much longer. The most important thing is that the two of you make the most of your time left together. What kind of testing has been done to arrive at the diagnosis of unknown primairy? Did he only have a biopsy, or was there extensive MRI and CT scanning done? Did he have a PET Scan or even a SPECT scan? You might also consider having the biopsy slides re-examined at a major cancer center such as Memorial Sloan-Kettering in NYC, MD Anderson in Texas, or the Mayo Clinic in Minnesota. Chances are they will have the same findings but it can't hurt to have the experts take a look and see if they can't find something missed. They might even have clinical trials going on that could be of aid to your husband's situation.
    Anonymous 42,789 Replies Flag this Response
  • They ran numerous marker tests, but after they found that he had malignant ascites,( the biopsy was from abdominal fluid,) all treatment thereafter was palliative in nature. They have done some scans, but cannot locate the primary. The malignant ascites is a stage four metastisis, I believe. Strangely enough, my husband does not suffer from pain, but he is exhasuted and sleeps so much.
    Anonymous 42,789 Replies Flag this Response
  • Good to hear about the pain issue- it would be that much more unfortunate if he did have it. I've read that in some instances cancer doesn't cause any though. It seems to be related to the tumor growing and pressing against nerves or other organs. The extreme fatigue might actually be a side affect of the chemotherapy more than anything else. It's common in advanced/end-stage cancer, but if your husband is eating normally and gaining BACK the lost weight then it's probably difficult to say. Often cancer causes a state of severe malnutrition which is largely responsible for the fatigue, but studies indicate that scientnsts don't truly understand what goes on. I hate to ask you to discuss this but I've never been able to get a clear answer from anyone: In a situation like that of your husband, why exactly will he die? Do the doctors think the cancer will invade his heart or lungs and cause them to stop functioning? Also, I remember seeing a post on the American Cancer Society message board about a supplement widely used in Japan for chemotherapy recovery: AHCC, active hexose correlated compound. It's a mushroom derived product and seems to provide massive boosts in the immune system's ability for those who have lowered ones from cancer treatment. I don't know if it works or if it's safe (allergies to mushrooms would potentially be problematic) but it's something you might want to look into.
    Anonymous 42,789 Replies Flag this Response
  • I think he will again suffer from the malnutrition and probably waste away. I have heard that people die from the cachexia moreso than the cancer. I bought him some of that zeolite, but he has to wait until he finishes this round of chemo to take it.
    Anonymous 42,789 Replies Flag this Response
  • My husband is now underging his second round of chemo. It is a mucinous adenocarcinoma arising from an unknown primary causing the malignant ascites. They have to do paracentesis to relieve the abdominal swelling. I believe the condition is called PMCA and there are only about 250 new cases every year in the US. He has now outlived his prognosis of 3-six months. He is still very fatigued, weak and sleeps most of the time. I have ordered some more paw-paw to go with his chemo therapy. His doctor said they were astounded by the results he got from the first chemo, and are hopeful this time will produce the same.
    Anonymous 42,789 Replies
    • August 16, 2007
    • 11:08 AM
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  • They now feel my husband has a rare cancer (pmca) and are still treating him palliatively. He maintains a positive attitude. Supposedly only 250 people a year get this cancer, his primary site still remains unknown.
    Anonymous 42,789 Replies
    • October 19, 2007
    • 10:29 AM
    • 0
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  • I am glad your husband has a good addatude and things are going well for the two of you.I also have recently been dignosed with cancer of an unknown primary.The early saga is listed here http://forums.wrongdiagnosis.com/showthread.php?t=18738&highlight=roseasharnThey have found only the one mass so far. Since my surgery I feel good and have appitite back, I sleep pretty good, and when I donot I think it is stress related.I start chemo in about two weeks.Has any one seen a good outcome from this kind of thing?
    roseasharn 15 Replies
    • October 20, 2007
    • 02:02 PM
    • 0
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  • Have you checked out PMPAwareness.orgPCMA is a rare cancer with the primary usually the appendix. There is no "cure", but there is something that can be done, more than pallative. However only a few surgeons in the USA can do it. It's a cytoreductive surgery (remove all tumors and mucin from the abdomen) and while on the surgical table, they pour heated chemo in the abdomen for about 1.5 hrs to kill off the microscopic cells. People who have gone through this call it the "Mother of All Surgeries" (MOAS).My husband was diagnosed with PCMA in Sept 2004, had the MOAS in April 2005 by Dr Sardi (he's at Mercy Medical Center in Baltimore). He's been cancer-free since. They can't call the cytoreductive surgery with heated chemo a cure since there aren't enough people out there with this cancer, but it's the best available. Only 1 in 1,000,000 get this cancer. It's also called Pseudomyxoma Peritonei (PMP), beside mucinous adenocarcinoma (the PCMA variety of PMP).You can contact me at jennifer_stanhope@yahoo.com if need more info.Good luck!
    Anonymous 42,789 Replies
    • December 6, 2007
    • 09:22 PM
    • 0
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  • This is to anyone who has cup cancer. there is a private company in San Diego that does genetic testing specifically for cup cancer. It costs $3000 and they can do it by mail - internationally, too. Its called ‘Cancer Type ID’ and they have a good website. I made initial inquiries but unfortunately it was too late for us to make use of it. I hope this helps someone.lulume
    lulume 1 Replies Flag this Response
  • This is to anyone who has cup cancer. there is a private company in San Diego that does genetic testing specifically for cup cancer. It costs $3000 and they can do it by mail - internationally, too. Its called ‘Cancer Type ID’ and they have a good website. I made initial inquiries but unfortunately it was too late for us to make use of it. I hope this helps someone.lulumeWanted to share another test that was used for my mother called 'Tissue of Origin' by a company called Pathwork diagnostics. They are also out of california and based on our conversations with our oncologist, it played a huge role in getting her the right treatment.
    Anonymous 42,789 Replies Flag this Response
  • This is complete of the most outstanding sites in this area. Look in here often and propose to all, because it is immensely recommended. It is rare that the admin pages so cared against honest news on the stage and its layout.
    beloBlenula 60 Replies Flag this Response
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