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My uterine cancer has metastasized

ginik
Posts: 1
Joined: Jan 2003

I was diagnosed with endometrial cancer, surgically removed all--Jan 2, 2002. It was a mixed type of cancer, carcinosarcoma. Because of this although there was nothing in lymph nodes, nor in abdominal wash, I had 33 external radiation treatments followed by 3 internal. My followup care showed no signs of anything in June CT Scan, but this past Dec, there was a nodule on my lung. I was to "wait 3 months" for another scan, and see if any changes. I was going bonkers with the wait idea. They did a PET Scan, last Wednesday, from base of brain stem to pelvic area, showed three nodules on lung. Meet with thoracic surgeon this comeing week, but in order to make an informed decision, they are also doing a MRI of my head. I am 67 years old, this past fall when all this was beginning again, I felt better than I have for several years. Now I am having to cope with something worse than a year ago. It isn't easy. Would like to have someone to talk with.

dinnk
Posts: 1
Joined: Mar 2003

my name is karen i amm 33.i have to have same done on 3/18. mine was also mixed. please keep me informed on your health.

Gini
Posts: 3
Joined: Sep 2003

I am sorry to have not returned to this web page for such a long time. My surgery done in January of this year removed one nodule from lung, and one from chest wall (this one was not cancer) The cancer was there in the lung, now. Scans showed several nodules, not large enough for surgical removal. Future surgeries, I was told. Then 3 months later....cannot remove surgically, would have to remove too much of the lung. So chemo was the "last option". I had 3 sessions of chemo each month for 4 months. This did not shrink the nodules, as had hoped. Latest CT Scan showed one of the nodules slightly larger, although they had not changed in size during the first 3 months of chemo. Now it is just a matter of time, I am told...nothing more can be done. Not good news, and most of the time I can handle it, but I have times that it is too much to handle, realize that inside of me is growing something that will take my life. I feel good, so am using everyday to it's fullest. Gini

Mdotsie47
Posts: 28
Joined: Dec 2011

I have just been told I have a very large lung mass that is destroying at least one rib (very painfully) and that surgery will not help. I had uterine adenocarcinoma stage 1C in 2008 with a recurrence in the urethra 2010. I felt fine until I developed a sharp pain in my right armpit and down the right side of my back. Now my onco says chemo and radiation may help but there small nodules in my lung in addition to the big one and I am scared.

Some patients have surgery for lung masses that are uterine cancers, so I wonder why mine can't be removed. Two docs have said this so I guess another opinion is pointless. I am 64 and want to make sure they do as much as possible to prolong my life.

I feel that you and I are in the same boat, even though I have not yet been told there is nothing more they can do. I am not getting the impression from my docs that the outlook for me is very good. Have you been told a life expectancy timeline ?

Mdotsie47
Posts: 28
Joined: Dec 2011

I have just been told I have a very large lung mass that is destroying at least one rib (very painfully) and that surgery will not help. I had uterine adenocarcinoma stage 1C in 2008 with a recurrence in the urethra 2010. I felt fine until I developed a sharp pain in my right armpit and down the right side of my back. Now my onco says chemo and radiation may help but there small nodules in my lung in addition to the big one and I am scared.

Some patients have surgery for lung masses that are uterine cancers, so I wonder why mine can't be removed. Two docs have said this so I guess another opinion is pointless. I am 64 and want to make sure they do as much as possible to prolong my life.

I feel that you and I are in the same boat, even though I have not yet been told there is nothing more they can do. I am not getting the impression from my docs that the outlook for me is very good. Have you been told a life expectancy timeline ?

ckandle
Posts: 1
Joined: Mar 2003

I was diagnosed 2/93 with endometrial cancer at age 44. Clear until 9/96 with metastasis to lung. Removal of one lobe of lung. Clear until 2/02 when diagnosed with tumor on abdominal wall. Had sarcoma present as well as MMT (which as I understand it is endometrial cancer mutated and acts a lot like ovarian). Aggressive. Surgery, major infection, chemo, radiation, abscess, still have an open wound a year later but still healing. Good news--feeling great, positive, life after hell. Glad to talk to anyone who relates. ckandle

jilld
Posts: 3
Joined: Mar 2003

Well I've read alot about uterine cancer removed and then showing up in the lungs. I've always suspected that it's a possiblity (including what my doctor has insinuated) but now I know it's happening out there. I had successful surgery (THA + whatever else they could take) last June and have been cleared so far. I thank God every day, but I also think every day about when and if it might return. No one I know has any idea what I'm going through. I was very psyched to find out about this website. I'll keep in touch.

Gini
Posts: 3
Joined: Sep 2003

jilld...and all others who replies to my first message on 1/11/03. I too am thankful for finding this information. I would like to have more direct contact with persons who are going through what I am. There is no cancer support group nearby, and I find that I really need someone to talk with, wish there were someone who could be there for me, when I have those nights of frightening thoughts. there are too many of those. I feel health, and when I find myself awake in the middle of the night, the thoughts crowd in...what is actually going on inside me..against my wishes, against my control. It is such a horrible thought. I have parents aged 85 and 92...this should be my heritage, but the big C got in the way. Prayer helps at those times, but it just seems there is so much more that I want to be able to do. I posted a response earlier this evening, and realized many more persons have responded, and want to thank all of them...would like to be able to be in touch more often, now that I have found the website again. I have moved, and now have a new e-mail address, so I have had to do some re-registering to get in to this site. Thank you, everyone who responded to my original message. Words of encouragement are never "too many!" Gini

oceans50
Posts: 1
Joined: Apr 2003

Hi ckandle - and all of you amazing people sharing on this discussion board. I have a friend, Mary in Oklahoma, who was diagnosed about 6-8 months ago with carcinosarcoma mesodermal tumors of the uterus. She's had a hysterectemy, and a course of radiation, and they started her on chemo which, after two doses, was not working. Further, they saw on her last CT that she had a spot on her lung and (I think) liver. They tried her out on a Thalidomide trial - but she could not tolerate it, and now they have her on another chemo that they say may only provide a 30% chance of working. I feel lost as a friend - and have been asked to "research" a bit what/where/or how she might turn? You seem to have an incredible outlook on this trial you've been thru - I'm so awestruck by your strength, and everyone else on these boards, as I read them. Can you - or anyone "out there" lead me in any good direction...for how to find out what and where the latest therapy and doctors might be found...experimental or otherwise...??? She does nothave the internet at the moment, and is very low on energy. I'm hoping that thru your experiences you can guide me as to how to help her - with the medical AND the personal trial she's going thru..... Thank you to you all, and you - for sharing.
Andi, in South Carolina

pcram
Posts: 1
Joined: Jun 2003

I was wondering what was the original stage and type of cancer diagnosed? thanks..

lynda1511
Posts: 1
Joined: Mar 2003

Hi, my name is Lynda and this is my first time in the chat room. I had a total hysterectomy in May of 01 for uterine cancer. I had no chemo or radiation. I have check ups where they just do a pap smear. I have just had surgery for some polyps in my vocal chords. I'm waiting for the biopsy results but the doc was really sure it is not cancer. I'm wondering how you found the nodule and if that is the same as polyps? Was it part of a regular check up? Any info would be helpful. Thanks, I'm wishing you all the best.

WWW
Posts: 1
Joined: Nov 2003

My uterine cancer was treated by Taxol and Carbo; it was a stage IV B. It came back by Pet Scan (after I had a stroke a few weeks before my CA-125 had gone stellar. Would like reponses to this.

ladybug626's picture
ladybug626
Posts: 32
Joined: Dec 2003

Hello, in Nov.03', my Mom was diagnosed with stage IV B uterine cancer w/ metastasis to the lung and liver. It is the most common form, but it is an aggressive grade 3 cell. She is 55 years old. They will not do a hysterectomy until the nodules in the lung shrink. The lung is producing tachycardia in her heart. Her doctors remain tight-lipped about details, but gave the family a grim prognosis of 6 months to a year. Her 1st chemo started 2 wks ago with Taxol & Carboplatin. The 1st chemo did not effect the nodules in her lung, but they want to give 2 more chemos before assessing her response. How do we find the best treatment? Has anyone tried integrative alternative and nutritional therapies? Does anyone have opinions about prayer, or guided imagery? Are their any opinions about the carboplatin taxol combination? It seems like it has been used for several years. I wonder what its success is with uterine cancer. It is so difficult to find answers. I am working on an appointment at the Moffitt Center in Tampa, FL. Has anyone found hope at a Center, is it worth the trip? It is difficult to know what is best. How long has it been since your initial diagnosis? The CA-125 can have a false negative, but there is little stastical information available on the internet. I am sorry I do not have any information regarding that. I apologize for the excessive questions. I appreciate any responses.

annabel_heath
Posts: 6
Joined: Oct 2004

FROM annabel_heath(login name) or Email: annabel_heath@hotmail.com. Please see message board for details under uterine cancer. Had Uterine cancer clear and serous cell type . Chemotherapy was carboplatin/epirubisin. CA 125 still high at 80(should be less than 30). What type of cell type was your mother's uterine cancer jashe2350, as chemotherapy she had depends on the cell type?

annabel_heath
Posts: 6
Joined: Oct 2004

FROM annabel_heath(login name) or Email: annabel_heath@hotmail.com. Please see message board for details under uterine cancer. Had Uterine cancer clear and serous cell type . Chemotherapy was carboplatin/epirubisin. CA 125 still high at 80(should be less than 30). What type of cell type was your uterine cancer as chemotherapy you had depends on the cell type?

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