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Medical Forum / Diseases and Disorders / Cancer / October 2006Hello again
Hi everyone. I first posted here last year. I had squamous cell carcinoma skin cancer in 4 places. Surgeon had a feeling something was going on internally - had a CAT scan and Pet scan - 3 small pea sized nodules were found in my lungs. This is not the primary cancer site - they call this cancer CUP - cancer of unknown primary origin. Went through 6 mos of chemo - carbo and taxil. Finished in June. Mid Aug I had a small stroke and once again 3 small pea size nodules were found in my brain. Just finished 15 full brain radiation treatments ( linear acclerator ). I go on the 24th for a brain MRI and on the 26th for a throat to pelvic CAT scan. I am 44 yrs old. Guess I just thought I would post here again and maybe make some new online friends. Am feeling a bit down lately..................Guess this waiting for tests and results just gets the better of me............and then again the NOT knowing. And the not knowing what to expect prognosis wise......... And I just wish my husband would talk to me. He is a 6 yr colon cancer survivor and anytime I try to talk to him about things he just shuts down and says everything is going to be alright. Is it???? Angie > Hi everyone. I first posted here last year. I had squamous cell carcinoma > skin cancer in 4 places. Surgeon had a feeling something was going on [quoted text clipped - 15 lines] > > Angie Hello Angie, I remember you from last year. CUP carrys a poor prognosis. I'm not an expert, but I guess it's because it has spread before they can ID the primary site and get that out by surgery. It says here "In patients in whom the primary cancer is eventually found, the lung and pancreas are the most common primary cancer sites. " other primary sites are also mentioned here. http://www.cancer.gov/cancertopics/factsheet/Sites-Types/unknownprimary My guess is you've got squamous lung cancer with mets to the brain (but others could diagree). Sounds like they're doing the right thing with the whole brain radiation. I was thinking of you a few weks ago. A different Angie posted (end of September) seemed to have a less than understanding husband, you might relate to and make an online friendship with. Can you go back up the older posts and find her post? I hope you'll be a regular here and i'll watch for your updates. Hugs J >> Hi everyone. I first posted here last year. I had squamous cell >> carcinoma [quoted text clipped - 51 lines] > Hugs > J My hubby is actually wonderful, he just doesnt want to look at the future...........he wants to hope and think that things are going to be ok. He is a great companion and soul mate, I just wish he would talk about "things:" I guess in looking where he came from with his cancer, he just assumes I WILL be ok.......................... Going to see the neuro surgeon today, hopefully she will have some answers as to some of the weird things I am experiencing lately. Take care all of you. Angie > My hubby is actually wonderful, he just doesnt want to look at the > future...........he wants to hope and think that things are going to be ok. [quoted text clipped - 4 lines] > things I am experiencing lately. Take care all of you. > Angie It's hard to know what your husband's thinking. Perhaps because he had surgery, your cancer hasn't sunk in or he's in denial (doesn't want to talk about what might happen). Hard to know, really. A year ago, Steph asked about biopsy. I don't think you had one of your lung nodules? He also mentioned that 80% of CUP in women is in lung, breast or melanoma. I might have wanted to know, in case it was breast and something could slow it down. But now that it's in the brain, not sure if that would be helpful. (might have been longshot anyway) How'd your appointment go, Angie? Any answers? J >> My hubby is actually wonderful, he just doesnt want to look at the >> future...........he wants to hope and think that things are going to be [quoted text clipped - 27 lines] > How'd your appointment go, Angie? Any answers? > J No - didnt have biopsy of lung nodules - all were small, same as 3 in the brain. Surgeon told me today that they are all under 1cm. (Today was consult with neuro surgeon). Mom went with me today. Kinda wish she hadnt. Surgeon just out of the blue said "the normal prognosis for this is 1 yr", however I have several patients that are beyond that and going strong. Well my mom and I work together, I found out she told someone what surgeon said and was crying..............this is the part that just tears me apart!!!!!!! I am going to talk to mom tomorrow and just tell her that none of us know our destiny, we are all travelers here and our journeys can end at any time. I really hope I can get through this talk with her. Take care all Angie > "J" <ercent@anon.inv> wrote in message > > How'd your appointment go, Angie? Any answers? [quoted text clipped - 9 lines] > of us know our destiny, we are all travelers here and our journeys can end > at any time. So true, Angie. > I really hope I can get through this talk with her. Poor Mom. It must be so hard for her. Here's some hugs for you and mom. ( ( ( Angie ) ) ) ( ( ( Angie's mom ) ) ) J dear angie, how I feel for you, but on the other hand I it makes me feel a whim !! lol can imagine how you're mum feels & you, it sucj a hard thing to talk about. got you're email. keep strong you & all the others in the group. maureen (mo) >> "J" <ercent@anon.inv> wrote in message >> > How'd your appointment go, Angie? Any answers? [quoted text clipped - 23 lines] > ( ( ( Angie ) ) ) ( ( ( Angie's mom ) ) ) > J > No - didnt have biopsy of lung nodules - all were small, same as 3 in the > brain. Hi Angie, It says here http://www.mayoclinic.com/health/lung-nodules/AN01082 (Mayo Clinic) that lung nodules can be benign or cancerous and some of the other causes are: * Histoplasmosis, a fungal infection that primarily affects the lungs * Tuberculosis * Lung cysts * Vascular abnormalities A nodule that appears in earlier X-rays and hasn't changed over many months or years is probably not cancerous. However, if a nodule is new or has changed in size, shape or appearance, your doctor may recommend further testing to determine if it is cancerous. These tests may include: * Computerized tomography (CT) scan * Positron emission tomography (PET) scan * Removal of tissue (biopsy) for examination under a microscope ____________________________________________________ I think you're getting some scans tomorrow? Good luck with that. When you first came here, in December, they were thinking leukemia or lymphoma. Then you mentioned a mole removal and something purple and then pathology for squamous skin cancer. It's sure complicated. And now they think CUP? "They" being your husband's colon cancer doctor? and neurologist? It's been a roller-coaster of diagnosis. In absence of a biopsy, I think I'd ask for an opinion (on the various scans) from a different radiologist. Is there a major cancer centre nearby where you can get a second (independent) opinion? I think that's what I'd do. Let us know how it goes with the scans, please? J Had my brain MRI done Tues and chest/abdomen CAT scan yesterday. There were 3 nodules in my lungs all about the size of the tip of your thumb (which were about the same size as the 4 sq cell carcinoma skin cancer sites). They were found after having a cat scan and then a pet scanin December. After 6 mos of chemo, carbo and taxil 2 of the lung nodules were gone and the 3rd had shrunk. Finished the chemo in June, in July I decided I wanted to quit taking a med called Lamictal which is used for seizures, however I was taking it for bipolar, and I wanted to see how I got along without it. Thankfully I quit taking it, because I had a seizure/stroke at work and that is how we found out about the 3 spots in my brain (all of which are the same size and smaller). The docs all said if I was still taking it, I wouldnt have had the stroke thing and prob wouldnt have found out about the brain until much much later. I too have questioned things but I think mostly I didnt want to admit I have cancer. I have decided that when we get all the results next Thurs, that I may want to pursue another opinion depending on what things look like. I really do not like the cancer facility here - it is at Ohio State University. Any ideas from anyone?? Through all of this, I have been confused at times. Especially with the CUP diagnosis. It would have been easier knowing WHERE it started and how long it had been there. But I have my guesses, and that would be it was from the intestines or colon based on an episode last year early summer............I have been told that tumors can expel themselves or dissipate from the original site and I believe that is what happened in my case. I do have one question. I finished the full brain radiation about a month ago and the last 3 weeks I have been really sick to my stomach and not wanting to eat, as well as most things taste yukky. Could this be from the radiation this long after I am done??? Well thats all for now. Will keep you updated. >> No - didnt have biopsy of lung nodules - all were small, same as 3 in the >> brain. [quoted text clipped - 41 lines] > Let us know how it goes with the scans, please? > J > I do have one question. I finished the full brain radiation about a month > ago and the last 3 weeks I have been really sick to my stomach and not > wanting to eat, as well as most things taste yukky. Could this be from the > radiation this long after I am done??? Well thats all for now. Will keep > you updated. I had WBR in Jan, 2004. There is a longish lag time until you are back to your fiesty old self. It took me about 3 months before I could enjoy simple pleasures such as chocolate, or coffee. It took about 3 months for my hair to decide it was going to grow again. In short, everything takes a lot longer than you want it to. It took about 8 months before a simple task didn't make me huff and puff. It takes a lot longer to get over the WBW side effects than it did to get them. Hang in there. you will be feeling better eventually.  SignatureMia culpa, mia culpa, mia maxima culpa Jimmy Buffet Bob in Carmel, CA > Had my brain MRI done Tues and chest/abdomen CAT scan yesterday. There > were 3 nodules in my lungs all about the size of the tip of your thumb [quoted text clipped - 13 lines] > opinion depending on what things look like. I really do not like the cancer > facility here - it is at Ohio State University. Any ideas from anyone?? University hospitals are usually teaching hospitals? Good places, in my book. Maybe it's best left as is. Thank you for explaining, Angie > Through all of this, I have been confused at times. Especially with the CUP > diagnosis. It would have been easier knowing WHERE it started and how long [quoted text clipped - 7 lines] > wanting to eat, as well as most things taste yukky. Could this be from the > radiation this long after I am done??? I'm sorry. I don't know the answer. I hope that improves soon for you. > Well thats all for now. Will keep you updated. Please and Thank you, Angie. Hugs J >. I really do not like the cancer > facility here - it is at Ohio State University. Any ideas from anyone?? What about the "Cleveland Clinic." They are always top rated in the Newsweek annual edition about which hospitsl, etc. >>. I really do not like the cancer >> facility here - it is at Ohio State University. Any ideas from anyone?? > > What about the "Cleveland Clinic." They are always top rated in the > Newsweek annual edition about which hospitsl, etc. Holy cow. Thanks turtle, I hadnt even thought about that...........I was actually looking at MD Anderson in Houston.............but thx for the idea too. Sorry to hear about your diagnosis or lack of it...sounds like you have been through alot. Having a good relationship with your healthcare team is essential and it sounds like you are on track. It is very rare to have squamous cell skin cancer spread, I am thinking your health care team agrees otherwise they would not call it CUP. Alex A cancer survivor and former primary caretaker of cancer patients, |
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