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Uterine cancer metastasized to lung - looking for others to talk to with similar condition

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

My uterine cancer metastasized to my lungs. I went in for bronchitis; otherwise I would still be walking around with it spreading by the day, as I am in otherwise excellent health. I start chemo. on Friday. Just wanted to enter the forum and be part of the community. I have a fantastic support team with family and friends but would like to connect with other survivors going through this or who have been through this.

Thanks,
Babs in sacramento, Ca

Mosie
Posts: 16
Joined: Jun 2012

I think someone put on here to get a massage ,i heard you shouldnt have that done when you have a serious illness.Just incase id check it out first.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Honey, It;s been 2 Years since treatment and I feel like you everyday! Short of breath, no interest in anything, no concentration at all, and I gained 30 pounds! I don't like me very much! If you find the "cure" PLEASE let ME KNOW! best, debrajo

Mosie
Posts: 16
Joined: Jun 2012

Debrajo, i just was able to read your whole message.Im going to try what ever i can to loose the weight.I read an article on Dr.Oz. and he suggest Flax seed and Wheat germ ,says you loose weight and feel lots better.If you like to read or meditate that lifts my spirits.Do you get out at all? I dont know if its normal to feel like we do.Im gonna have to pick my doctors brain,wont see him for 3 months. Mosie

Mosie
Posts: 16
Joined: Jun 2012

Thank you so much for answering me.I hope you dont mind my asking are you cancer free now? I sometimes think living alone can be a little depressing taking care of your self,other wise i like being alone.My computer cut off where you said let you know ?? sorry i didnt get what you want to know.Im going to try eating better,now i crave sugar like crazy,i heard cancer feeds off sugar?Why did we gain weight? i dont get it,its hard walking and exercising,but i have a cane,i take with me.Do you work feeling like this?Im stage 4 and am not working now.Lets keep in touch, Thanks Mosie

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Hey Mosie! I am considered "in remission" at the moment. I took my last dose of taxol/carboplatin May 8, 2010 and the CA125 is good. I don't like that last visit it was 17, but dr. was comfortable enough to give me 6 month visits now. I am craving sugar and starch, but those were pre cancer cravings also. They tell me the steroids help to put weight on and o keep it on after treatments. I have been eating better, but not able to stop the Caffeine-Free Diet Cokes though I have cut down. I had to have open heart surgery 8 weeks before hysterectomy to replace aortic heart valve that had a birth defect in it. I was walking three miles a day BEFORE surgery...now I am lucky to walk two blocks. That maybe due to the heart, the cancer, the chemo,or the radiation...I just don't know. I do have an in-door stationary bike that I ride when I can. Since Mama has moved in I feel less and less like doing the bike. She tries so hard to help me that she MAKES more work for me. I use to be a big reader( also crochet, sewing, quilting, needlework, and I was a family genealogist for years), not I don't do anything(including cleaning house)except take care of the family( I had six children and so far, nine grandchildren). I am what my daughter calls a dinosaur, I have always been a stay at home Mother. I was a 1a grade C so not quite as bad as some. Do keep in touch...I could use all the input I can get from the braver of you ladies! Best, debrajo

Mosie
Posts: 16
Joined: Jun 2012

Hey Deb ,its good to hear your in remission.You have been through alot.I was a dinosaur too.You had some fun hobbys,but i understand not getting back into them,i lack desire to do my hobbys too.My doctor dosnt do the CA125 he says it dosnt show anything for uterine cancer,but alot of the women have it done. Im waiting for test results, hope to hear tomorrow. Mosie

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Hey Mosie, I have never heard of a dr. NOT using the ca125 at least as a base-line in the beginning. Mine was only 42 before surgery so I guess it was just getting started good. I've had one EVERYTIME I step into the doors at M.D. Anderson! I will be waiting to hear from you when you get your test back. I will be praying for good results!Some times we cuss the numbers for making us stress, but how sweet it is when the are good! Best, debrajo

Mosie
Posts: 16
Joined: Jun 2012

Hey debrajo, i had a lung scan done the nodule they found was not cancer, they allready removed met.cancer a few months back from my lung.Sometimes i really wonder about my doctors,i think they feel i wont make it so why put effort into my case. Mosie

Mosie
Posts: 16
Joined: Jun 2012

I wondered if anyone has a problem with a discharge,i know this is personall,but my doctors havnt much of a clue what it is.They said its one of three things, 1.infection 2.a side effect of internall radiation 3.cancer. The doctor said i dont have an infection and i had this before radiation i believe,it was one of my first symptions.So that leaves cancer, meaning the chemo didnt work? If anyone can help me with this ,please answer back. Thanks Mosie

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Hey now!!! Do not jump to any conclusions! Dr.s are not God! They make mistakes all the time...I know! It sounds like an infection to me. You had a hysterectomy, right?Have you been sick lately? Sometimes the lymphatic system just goes hay-wire all by itself. Wait for the ca125 and if it's high, get them to do a scan. Get a second opinion if they keep scratching their heads! Keep us up on what the heck is going on! Best, debrajo

Mosie
Posts: 16
Joined: Jun 2012

Hey Deb ,its good to hear your in remission.You have been through alot.I was a dinosaur too.You had some fun hobbys,but i understand not getting back into them,i lack desire to do my hobbys too.My doctor dosnt do the CA125 he says it dosnt show anything for uterine cancer,but alot of the women have it done. Im waiting for test results, hope to hear tomorrow. Mosie

Mosie
Posts: 16
Joined: Jun 2012

It very confusing,I had the hysterectomy 2006 or 2007,no treatment for cancer afterward they got it all.Last summer i had bleeding and discharge,and they found a tumor and removed it,then i had internal radiation,after that they found uterine cancer in my lung,then took it out of my lung,this has been the last9,or 10 months.Three doctors gave me a year.They wont do the CA125 test.I see the dr. in 3 months after that another body scan.The doctor who did the radiation says this discharge is cancer too?? I had it for 9 months. I wish i knew what it was.I asked my dr. dont other women with uterine cancer get this? thats when he said its 1 of 3 things.I understood uterine cancer that reacurred isnt common, one dr. said there is no cure for it its going to kill me,becaus it took so long to come back,its a bad sign. thats it in a nutshell. Thank God for my sence of humor! it gets me through.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Good Lord girl, where in the world do you get treatment? Sounds like you found all the Stooges at once! Get the heck to a good gyc/ong...now, and demand a ca125! let us know what is going on! best debrajo

Mosie
Posts: 16
Joined: Jun 2012

Hey Deb, I live in Buffalo New York,so everyone thinks Roswell is the best so thats where i went after the cancer spread.When this started last summer i did go to a different doctor, she took the tumor out and another dr. did the internal radiation.Im going to check into the CA125 with my regular Doctor.Ill wait about a month and see what we can do.You wouldnt believe what they have said and done to me. Thanks for being so nice. Mosie

Mosie
Posts: 16
Joined: Jun 2012

Does anyone else have any information about Uterine cancer and mets.lung cancer??What test their haveing done ? and this discharge? How long you have had it? any information. Thanks

Karenhopeful
Posts: 38
Joined: Jan 2012

My oncologist does not do the CA 125 test. They don't think it correlates to uterine cancers.
My oncologist tells me I'll be around for a long time, my cancer will be treated like a chronic illness. My radiologist doesn't give a time, but says we are all going to die sometime and her treatment is just palliative, we can't predict how long I may hang around -so I should be doing things that make me happy.
My oncologist says my cancer is metastatized stage one grade 3, like my original finding, only it has spread. My radiologist says it is stage 4 grade 3 because it has spread so much.
I am feeling slightly more hopeful right now. My back pain is much less, part of the nerve pain in my lower arm is gone, the pain in my underarm is almost gone, the nerve pain under my upper arm is much less. I think the tumor that was pressing on that nerve bundle is regressing. I still only sweat on one side, and my eye still droops. But maybe those can come back to normal too. I find out tomorrow if I'll be getting more radiation. Tuesday will be the end of my initial 15. The bad thing is I have a similar size tumor in the same position in my other lung. It has grown in a different direction - hopefully it doesn't connect with the nerve bundle under that shoulder!! I am like you, tired, no energy, no motivation to do much of anything, can't walk far or stand long without getting out of breath.
Another comparison of my two doctors: my oncologist says uterine cancer seldom goes to the brain, dont worry.I already have a shadow on my brain found by my radiologist who ordered the brain MRI.
I will have a ct scan around July 16. I'm anxious to compare the two tumors. Both at the top of each lung to see if we should also do radiation on my other side.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I am glad you are getting such positive results, Karen. Do you know what type of uterine cancer you have? Some uterine cancers do have a correlation to ca 125, as mine does; other do not. When i had to change gyn-oncs a few years ago, the NP handled processing of test orders per Dr's protocols. I noticed they were no longer monitoring my ca125 and i asked her why not. Her response was the same - not relevant to uterine cancer. I then set her straight and I am regular monitored and it is quite reflective of the status of my disease progression, treatment response. The brain met issue with uterine cancer is that it rarely mets to brain unless one gets lung mets which can then metastasize to brain.
Are you doing both chemo and radiation together?
Best of luck for continued good response to treatments.
Annie

Mosie
Posts: 16
Joined: Jun 2012

Karen, i was wondering if they call what you have in your lung nodules? I had a small part of my lung removed, they didnt have to do that to you? I hope you improve and feel better,I have heard of so many miracles with cancer its amazing!!! Mosie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Your stories of doctors is pretty sobering. It's crazy that you, Annie, had to educate your cancer treatment team!! Shows that there are some dull tacks out there. And with rare cancers we can't afford anything but the most educated and open-minded practitioners.

Mosie, with UPSC (which Annie and I have) the CA125 is often a reliable marker. If you have this then it would make sense to do the CA125. If you don't feel valued and comfortable with your team, please get some second (or third) opinions.

All the best, Mary Ann

Mosie
Posts: 16
Joined: Jun 2012

Hi Mary Ann,thanks for writing.I had three doctors at Roswell all tell me the same thing.The doctor before that wasnt much help either.He did internal radiation which was very painfull,they said hold the nurses hands and scream if you need to.I later read you can be given something to help the pain.When i came out the nurse in the hall way laughed and said i lied to you it does hurt!They didnt think chemo would help,one Dr.said if it was him hed just enjoy the time he had left.I asked them to be honest with me,and they were.Later he denied saying that, but i always had someone with me,they heard it too.A few places are booked up ,no appointments that people recomended.Ill go back once more in three months and maybe by then,hear of another Dr, Thank you , Mosie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Mosie,

I'm from upstate NY and I always had good impression of Roswell. However, after my beloved brother in law was chemo-ed to death (my thoughts)there, my impression changed. Your experiences have confirmed my thoughts. There must be other places to get treatment - it sounds like a systemic problem.

Have you checked online for independent gynecologic oncologists?

sunflash's picture
sunflash
Posts: 152
Joined: Aug 2011

Mosie, it's inexcusable to be treated like that by your doctor! To have a nurse tell you she lied to you!! Unbelievable.

When I had internal radiation 5 yrs ago, I was admitted to the hospital and given an epidural. I felt absolutely no pain.

My doctor told me, "don't try to be a hero. If you have pain tell me and we'll deal with it. Studies have shown that patients who don't experience pain heal faster and better!"

I'm stunned that someone would do that to you.

Hope you are able to find a more compassionate team.

Mosie
Posts: 16
Joined: Jun 2012

I will have to see where i can go next, i have an apointment i was going to keep its for three months and they will do a scan to see if cancer is gone.Meanwhile ill check around and see whats available.The radiation i had was with the seeds is that what you had? and it left me with discomfort internally. Mosie

Karenhopeful
Posts: 38
Joined: Jan 2012

Gosh, a month since my last post. I had 19 radiations of my right lung. New CT scan had better results than the last: tumor in abdomen is gone, no sign of any activity in lymph nodes anywhere, no new tumors, right lung decreased by half (where I had 19 radiations), left lung slightly decreased and called stable. These are big tumors - not nodules. They started at 9cm x 6 cm approximately. I will have the scheduled 6th chemo tomorrow and will continue with one a month for number 7 and number 8 as long as it continues to help. I am feeling quite good, no more back pain, nerve pain in arm almost entirely gone and what is left I don't really notice. I still get out of breath really fast, but it is a little better. I need to take a rest (long naps) after even slight physical activities. The other side effects are that I only sweat on my left side, my right eye droops.
Radiologist said no treatment for left lung unless it should also start to bother me. She also said the good news is that my tumors are sensitive to radiation.
The radiologist showed me her scans of where the tumor was pressing against my esophagus(I think, one of those pipes in my throat) and caving it in, also how it was nearly into the openings of my spine which could cause paralysis. This was never mentioned in the ct reports I received or by my oncologist. So glad the tumor shrunk!! I will have another MRI on Friday to check on the shadow on my brain. Since my small stomach tumor disappeared, I'm hoping the shadow on the brain is the same or gone. It was only about 3mm by 2 mm.

Ro10's picture
Ro10
Posts: 1395
Joined: Jan 2009

Glad your rumors have shrunk. Glad you are responding to the chemo and radiation. Wishing you good news on your MRI. Prayers continue to come your way. In peace and caring.

Karenhopeful
Posts: 38
Joined: Jan 2012

My MRI came back showing the small spot had doubled. My radiologist suggested getting the gamma knife radiation procedure and got it rolling even before my appointment. I guess because the MRI is only good for 2 weeks, if procedure came after two weeks, I'd have to get a new MRI. Busy two days. Visited 4 doctors offices, several calls. Two doctor visits the next day. The neurosurgeon said there are actually two spots and when they do their 1mm MRI scan compared to the 5mm MRI scan, there may be other small spots. They can treat up to about 10 spots but I sure hope it is only two. This sounds better than blasting my whole brain. I will have to have 4 screws put in my head to hold on the frame that will keep my head from moving during all of the procedures. That is what is scaring me the most right now. I know my type of cancer is sensitive to radiation and the radiation itself won't hurt, but those 4 screws just do not sound good at all!! They also mentioned possible stomach upset because of the medications I'll be getting during the procedure. I am feeling really good right now, I don't want to feel worse.

Another concern, why didn't the hospital that did the MRI scan mention the new spot in the report. He showed us the scan and it was easy to see once we understood what we were looking for. This doctor is even more of a specialist than my gyne-oncologist and procedure is at a different hospital that has the gamma knife.

Karenhopeful
Posts: 38
Joined: Jan 2012

The procedure went well. Lots of numbing cream before I left for the hospital. Then something to make me slightly drowsy and some valium. I barely felt the first shot in the forehead, none of the others, and didn't really feel the screws going in, but I think I was crying cause they kept dabbing the tears flowing from my eyes. Much better than I was fearing.
Only two spots were found with the more detailed MRI. Put on steroids and prilosec to counter act the steroids in my stomach. WOW!!! Did I feel good while taking those: more energy and motivation than I had in months! However, they started weaning me off after 6 days since I was having no side effects. Holes in my head have healed, no headaches at all. I get another MRI at the end of September to make sure the spots are not growing. They said they might always show up, and at first will appear larger as they sort of explode before dying. That is why they wait for 8 weeks to check their size. I had chemo #7 and am scheduled for two more chemo. CT scan first week of October to see if tumors are shrinking, stable or growing. I have felt very good since the last post. My oncologist is going to see if cyber knife could be a possibility for the two tumors still at the apex of my lungs, as they are not small enough for regular surgery. One has already had 19 radiations, so maybe not. Also, one is around a nerve bundle. I'd hate to lose function of all of those nerves that go to my right arm and face. I already have a droopy eye and no sweating on one side of the body because the tumor has pressed on the nerves. These are really minor things. I'd like to hear how some of you are doing with your treatments. What are you getting? I'm still getting carboplatin and taxol. I also get something to strengthen my bones as the tumor went into a rib bone and also cracked it. My last Ct scan never even mentioned the rib, so it must have healed.

Karenhopeful
Posts: 38
Joined: Jan 2012

Last week I found out the gamma knife had done its job, brain tumors shrinking and no new tumors. Today I got results of body CT scan. Chemo is no longer working and I have several small tumors in my omentum (fat layer over your stomach), visible but unknown lesions on the top of my liver that were not there before, one lung tumor grew a little the one treated with radiation was stable. Now they don't have any specific treatment for me, they are looking into possible clinical trials. Does anyone know of any for uterine cancer with mets? She said she would like to try Avastin but most insurance companies will not pay for it. Anyone with uterine cance who has or is using Avastin? Anyone with chemo stopped and using something else? I actually have no pain right now, just short of breath and emotional stress.
Looking for some kind of treatment.

soromer
Posts: 130
Joined: Mar 2011

I have known a couple of women who've used Avastin for uterine cancer, with mixed results.

If you haven't already checked them out, you might want to investigate the "eyes on the prize" website and discussion board for women with gyno cancer. I think there's at least one woman on there now who is using Avastin with good results.

I hope that you can find another treatment that will work for you.

qquester
Posts: 1
Joined: Jan 2013

I was just told today that my endometrial cancer has spread to my lungs. I started to read the stories on the site. I was encouraged by your name, it sounded hopeful and defiant. Sort of the way I hope I am feeling. You have stopped writing in October 2012. Please update me on your progress, I am rooting for you.

Mamalovesemmy
Posts: 1
Joined: Oct 2012

Hello there i have had the same thing happen to me i started chemo last wed. Let me tell you in only 24 , i have a 4 year old, go to school full time, and work full time. I thought this will be nothing no big deal man was i wrong! i am soooooo tired and my whole body hurts : ( not writing this to discourage anyone has anyone who has experianced this also had their white blood cell count drop very low? Because thats what has happen to me my doc says the chemo is going to be much worse on my body because i dont have the white blood cells to help me body function normaly. I along with you would love to talk to anyone who can relate i love my family but unfortunatly they are trying so hard to keep me happy and smiling that they arent giving me a chance to talk about it or talk about how im feeling : (
Jessika in florida

ConnieSW's picture
ConnieSW
Posts: 567
Joined: Jun 2012

Jessika, my heart goes out to you. A healthy person would be challenged by all you are doing. You are amazing. This is the place for you to be. No one can give support better than those who've been through it. Let it all hang out. We're listening.

BFITTERMAN
Posts: 3
Joined: Aug 2014

Just finished a post where I raved about Allegra for joint pain, then I checked my overflowing medicine cabinet and realized it was CLARITIN that had done the study that showed it effective for chemo patients.  They probably both work, but the studywas done on Claritin. Miracle stuff. Sorry for the error. B

 

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