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

Karenhopeful said:

MRI results not as good as hoped
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.

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.

clampett12 said:

Other treatments out there
I was diagnosed last year with endometrial cancer and had taxol/carbo for 9 months . Last Jan I was cancer free. Then came March and I had another pet scan and the hot spots that were in my lungs came back so I am on Doxil for 8 treatments I am on my 5th had a cat scan the other day waiting for the reslults. If this doesn't work is there anyone out there that can tell me what else can I do ?

Other treatments - clampett12
Do you know if your cancer is hormone receptive?

I was diagnosed Aug 2012 with metastatic EA (20 mos. post total hysto & internal rad).
1 lesion in lung, 1 in liver and "seeds" or "sprinkles" throughout my omentum.
I have had my 1st taxol/carbo session, feel much better overall, going for 2nd session next week, then CT scan to see what's what.

I was terrified when I got my dx because I kept reading these scholarly articles with dreadful outcomes for metastatic EA. Joined this network and these wonderful women have been talking me in off the window ledge!!!

Here's why I'm asking about the hormone receptive cancer cells ----

A gyny (mostly surgical) oncologist gave me the metastatic Dx, then referred me to a medical oncologist for the chemo. I know my first onco said Megace and some other drugs can help shut down hormone-receptive cancer cells.

Now my medical onco says Taxol/carbo is the "gold standard" for EA, with everything else tends to be less effective, but trust me, if my T/C regimen doesn't work, I'll be asking about anything and everything that's ever worked for other patients!

Megace has some side effects, but not as toxic as chemo, I believe, so worth at least asking about?

take care clampett12, positive energy & good wishes are being sent your way.
Nancy

NJZ62 said:

Other treatments - clampett12
Do you know if your cancer is hormone receptive?

I was diagnosed Aug 2012 with metastatic EA (20 mos. post total hysto & internal rad).
1 lesion in lung, 1 in liver and "seeds" or "sprinkles" throughout my omentum.
I have had my 1st taxol/carbo session, feel much better overall, going for 2nd session next week, then CT scan to see what's what.

I was terrified when I got my dx because I kept reading these scholarly articles with dreadful outcomes for metastatic EA. Joined this network and these wonderful women have been talking me in off the window ledge!!!

Here's why I'm asking about the hormone receptive cancer cells ----

A gyny (mostly surgical) oncologist gave me the metastatic Dx, then referred me to a medical oncologist for the chemo. I know my first onco said Megace and some other drugs can help shut down hormone-receptive cancer cells.

Now my medical onco says Taxol/carbo is the "gold standard" for EA, with everything else tends to be less effective, but trust me, if my T/C regimen doesn't work, I'll be asking about anything and everything that's ever worked for other patients!

Megace has some side effects, but not as toxic as chemo, I believe, so worth at least asking about?

take care clampett12, positive energy & good wishes are being sent your way.
Nancy

Megace
I just did a 2 month regiment of Megace and had no success. I will be starting chemo in a week or so after I have my port put in. I will be doing Taxol/carbo as well.

Mamalovesemmy said:

Same uterin cancer metastisized to lung
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

Jessika, my heart goes out
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.

missbabsonmars said:

Chemo. Tx
Hello All - the chemo. drug is the carbo/taxol combination. I have been extremely fortunate in that the side effects have been manageable: fatigue and moderate to severe joint pain in the knees for about ten days after treatment. I am receiving treatments every four weeks. Of course, I was in excellent health going into this and am doing everything I can to maintain that state of being by practicing many complementary therapies.

I am fortunate in so many ways! I have been a sober member of AA for 27 years, so I have an incredible support network there, along with a wonderful husband and sister, and many, many friends. I am also very grateful to have stumbled upon you lovely ladies!

Babs

Joint Paint with Chemo

Have just finished my six rounds of Carbo/Taxol with that horrible Neulasta shot -- and one of those gave me incredible joint pain. I couldn't sit still, couldn't sleep, you know the routine.  Then my darling PA told me about a study that was done by the makers of Allegra (allergy medicine, over the counter) and it seemed to alleviate the problem for many patients.What a difference this made for me! Took unbearable to just slightly annoying, and I could sleep again. I don't think I could have made it through without it.  Today I learned that I have two more mets endo tumors in my lung so will have to do another round of chemo. I was devastated for about an hour, then decided to put on my big girl pants and do the work.  Yuck, but hey, I haven't felt sick from the cancer since my first occurrence in 2011.  I don't know what medicines they will try next, but I'm definitely stocking up on the Allegra again. That stuff works.  Good luck and God bless you all. Betty

My Bad Advice

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

 

alidabee said:

how are you today?
I am new to the site. I am greateful there is a forum for others to join in as "Uterine cancer metastasized to lung " is not an isolated occurance. My beautiful mother (69yrs) had uterine cancer surgery in April and was cleared of cancer down there. Upon a CT scan before going in for surgery, Dr.s noticed spots in her chest - she was just diagnosed last week with two tumors that metastasized to her lungs. They have grown to 3mm since first noticed. I was in disbelief - unable to comprehend how this can happen. Today I have some comfort in reading your post as well as from others. I have yet to find the name of the medication they perscribed to mum, i only know it as a hormone pill that "should" shrink the tumors, with a follow up CT scan in 3mo. I wanted to know how you are doing these days?
thank you for sharing
alida

Did you ever get your answer?

Hi, Alida!

I am 66 and have been dealing with this crud for 10 years now. in 2004 I was diagnosed with uterine cancer and had a hysterectomy with the removal of the ovaries at the same time. Before the surgery, the gynecological oncologist thought it was probably Stage 1C. Ended up being IIIC. We immdeiately did 8 sessions of adriamyicin/cisplatin. Only real problem I had was it lowered the magnesium in my system so low that 10 days after the treatment, I'd end up getting a 4 hour transfusion of the magnewium. Seemed to work great.

In 2008, like some of the others on the forum, ended up going to the emergency room for bronchitis. Could tell from the reactions to the X-rays that something else might be going on. 3 days later got a letter suggesting that I contact my oncologist. We decided to just watch the nodule with CT Scans every 3 months. Worked fine - wasn't seeing any growth until 2010, when it tripled in size between two scans. We decided to try targeted radiation since the nodule is extremely close to the heart and right by the main bronchia.That shrunk it and it continues shrinking for about 6 months after the radiation. In 2011, saw another large spurt of growth so did 6 rounds of taxol/carboplatin. That shrunk it again and we kept watch with scans every 3 months. In 2012, saw growth again, oncologist felt since we'd already used the strongest chemos for this particular type that the best option would be to try Tamoxifen. It did really good until just now - I'm in the process of waiting to see the oncologist on Monday since there has been growth again. We'll have to see what we decide.

Jeanne

 

Grade 3 lung cancer mets

hi all,

i am am so glad to have found this forum. My mum who is 58 years old was dx with stage 1b endometrial cancer in late 2013. She had a full hysterectomy. Since then routine tests have been showing her cancer free. Until two weeks ago she went into emergency for a stomach pain. They scanned her and found spots in the lungs. After pet scan and biopsy it's been confirmed grade 3 lung cancer. About 15+ spots with largest one 3 cm. we are no doubt in complete shock. How can doctors miss this! Apparently the spots were there during hysterectomy but smaller and they dismissed it thinking it was TB or infection. Now they have grown all over her lungs. We saw an onco and she gave us a pretty poor prognosis and told us pretty much she cannot do much Other than to try to prolong her life. She has given her hormone tablets and said to see her in 3 months to see if that helps. Otherwise chemo would be next option. But given my mum is so fatigued she doesn't know whether she will survive it. Has anyone had hormone pills and did it prove effective? We are not going to accept this negative prognosis. There have to be things we can try to beat this! Hoping to hear from someone who had similar situation and managed to fight it. 

Diya

Hilajoan said:

MMMT endometrial C mets in lungs

I find the MMMT group very useful and helpful, and I've got to know quite a few of the 'girls' on it.  some of us die, some of us live for a bit, none of us live for ever.  However, I am now about to start chemo for the THIRD time, to try and limit the mets in my lungs from endometrial MMMT.   I have quite a story, and so hve many of the 'girls' on the UterineMMMT Yahoo group.  Maybe it would be worth a look.  My biggest one at the moment, on mediastinal lymph nodes, is 2mm, so apparently not life-threatening - ie, I can go on holiday before they start the chemo - just carboplatin this time, as it seems(seemed to help last time - and I didn't lose my hair.  My son and a friend with a different cancer both want me to get a second viewpoint, but I can't see what different treatment there currently is that can do anything.  Surgery will be major, and leave some behind;  radiation/proton beam/cyberknife will also radiate my heart;  so chemo....... Maybe see you on the uterineMMMT group.   It's also known as Carcinosarcoma, but there are others on board there, too.   Joan

 

 

Hi!

I found this site via a web search.  To start with, I'm now 59, type 2 diabetic, and morbidly overweight (5'10", 300#). After years of complaining about female complications to my military health provider, in June 2012, I was finally sent to an off base GYN.   She did 2 biopsies and both came back positive for endometrial adenocarcinoma.  By Aug, I was in surgery for a radical hyster and lymph node removal.  After that I was staged late stage 3 endometrial cancer, and a positive lymph node.  Because of the positive lymph node, I went through 6 treatments of chemo (carboplatin, taxol)  then 5 weeks of radiation to my upper, now shortened, vagina.  I finished the radiation in spring of 2013.  Seems everything was fine.   Late 2013, in a routine CT scan they found my lungs "lit up like a Christmas tree".  Not words you want to hear.  I had no symptoms at all.  Anyway, more chemo (the same drug), which did reduce the number and size of the nodules.  I was told I had had the max chemo (could be because of my size) and couldn't have any more for a long time.  My oncologist put me on an estrogen-inhibitor, Femara which has worked to reduce the number and size of nodules.  I am down to one small module on each lung.  Last CTscan showed no new nodules, but no further reduction in size.  I will say that Femara is rough, with some side effects, the worst being some extreme joint pain.  Add in being overweight and older with previous joint problems to start with, it can be rough sometimes. I thank God for tramadol.   I enjoyed reading everyone's stories and pray the best for you all.

ksdehn30 said:

Moving this topic up

are any posters still logging in and can update us on how they are doing after uterine cancer spreads to lungs?

I am new

I have been reading all the posts...just seems like not too many new posts. I had a full hysterectomy for uterine cancer in 12/2012. followed by internal radiation to make sure there were no cells still there. Then I got a met to my rt lung in 12/2014. they removed middle lobe of my rt lung and I had 6 rounds of chemo. My last treatment was one year ago yesterday. So far all is good I have a scan the first of June. My doc says this is as good as it gets and he believes it will recurr. I am just very tired can't get my strength back. I only had a singular met I have heard this is unusual.

I wish everyone well, prayers and hugs, Cindy

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