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

lkchapman said:

radiotherapy
I don't have bone mets but I work for a major cancer center and they sometimes use targeted radiotherapy to treat bone mets specifically to reduce the pain. You definitely should ask about it if you can't find relief elsewhere.
Laura

nancygt said:

other pain meds
I also have mets in lungs and worry about the bones. My best friends just passed away after 5 years of fighting Stage 4 lung cancer. I do not want to sound like a pusher but she used morphine/oxycontin(OC) successfully for over 4 years -tumors had taken away part of her breastbone early and she was never without pain. They used a combination of extended release OC for daily pain with a supply of immediate relief for breakthrough pain.She said it did not make her as "goofy" as the Vicodin, although the constipation was a chronic problem she battled. She did remain concerned about some degree of impairment driving and was very careful about timing dosages when she had to drive. The last year or so, the large dosages combined with weakened state(breathing issues, anemia, post op from brain surgery) made her friends intervene and take up the slack for driving as the medicine did have a greater impact as dosages to control pain had to be upped. We drove her or she used Road to Recovery drivers from American Cancer - that has made me volunteer for that program-I am lucky to still be able to drive myself to most appointment and have my husband to help when that is not advisable (e.g. chemo days). But it takes so much strength and passion to deal with the disease that I hate to see patients worrying abouty how to get to appointments. And I also hate to see anyone coping with pain if it is not necessary-my friend asked her oncologist if she was a junkie and addicted to the pain meds and he replied "Who cares-would you rather be addicted to pain ?" Smart aleck answer but some truth to it. I never took antidepressants or sleeping pills before the cancer diagnosis but now the leveling out effect of lexapro and the good night's sleep I count on with Ambien are very important to me - probably addicted. And I have been lucky with pain but knowing my cancer has now spread through bloodstream (lungs now but bones more likely), I will avail myself of strong effective painkillers when the time comes and try to be prudent about the side effects and being responsible.
As for treatment, tamoxifen to hope to stabilize growth in lungs and probably carboplatin and Taxol again (been several years) after first of year as we hope to get body stronger and fit in a few trips before chemo makes that hard.
You should not have to hurt for the rest of your life- I am in smaller city amd my onc will probably do pain management-but my friend was in big city hospital complex and he used their pain mgmt. clinic who had an understanding of managing severe chronic pain.

HellieC said:

Don't give up hope!
I'm so sorry you've had a diagnosis of a pelvic lymph gland mass. You're probably right that you can't have further pelvic radiation - but there are likely to be other options for dealing with the little blighter! Further surgery and/or chemo sound likely routes. If it's an isolated nodule, then they may be able to remove it completely with surgery.
Please don't give up hope. We're all here for you and there will be a way forward.
Kindest wishes
Helen

Double Whammy said:

Silicon Valley?
Hi Neighbor. I'm up by Sacramento.

You're in close proximity to Stanford and UCSF. Both NCI accredited cancer centers and both have some top notch clinicians, researchers and clinical trials. Your insurance should cover a second opinion just about anywhere if you want one. All NCI cancer centers are supposed to have easy access to information and clinical trials amongst the network.

Several women on this board have sought second opinions at MD Anderson or Mayo. Both NCI cancer centers.

Just sayin' . . . second opinions can help resolve uncertainties to treatment choices.

Suzanne

Mdotsie47 said:

Treatment plan opinions
So far in this round of cancer (2nd recurrence, with masses in the lung and aortocaval lymph node, and in the third rib, which is almost completely eaten by cancer), I have seen five doctors. Three of them agree on the treatment I should have so I guess I have enough opinions. I hope so, anyway. I start radiation on the rib/lung mass next week and will have chemo after that. My rib is causing a lot of pain, which I am told will get worse before it gets better. No plans for surgery.

If those who have had chemo for uterine cancer can give me an idea of how long your treatment affected your health as far as being tired, or any other symptoms, I would like to know. Was it only during treatment, or did the effects last beyond your final chemo?

My doctor has added two drugs to my pain management regimen. One is elavil and I think the other is called neuronal, though I have the generic form of it. Both take a while to build up in the system, so I am not benefitting yet. They cause drowsiness but that is good when I' m hurting.

Julie2009 said:

Lung Nodules
I was diagnosed with endometrial carcinoma in 2009.I had a total hysterectomy at the age of 38. I opted out of radiation. I also have nodules in my lungs that are stable. My question to all of you is what signs did you have that the cancer had metastasized into the lungs? I have a resistant cough for the last six weeks. I also am having issues breathing during aerobics class which has never been a problem. I have a dr. appointment next month, but I am thinking maybe I should try and get a chest x-ray from my normal Dr. Any advice would be grateful.

Mdotsie47 said:

Hi karenhopeful, and best wishes!
To try to answer your questions to me....my treatment plan right now is three weeks of radiation (just finished), hormone treatment with Megestrol 4x a day, and zometa infusions to rebuild my rib bone. I was in extreme pain before radiation. Two OxyContin and lots of Vicodin daily, as well as daily gabapentin. I have been able to eliminate the Vicodin and take only one OxyContin daily. I still take three gabapentin daily. The pain is now one or two on a scale of ten. I will have a CT scan in late February to see how much effect the radiation has had on the lung and rib tumors. I also have a small mass on my aorta that may be helped by the Megestrol.

My doctor says he is holding off on chemo to see if these other things work, because he is concerned about bone marrow damage from chemo. He is a respected gynecological oncologist, so I have been trusting his judgement up to now. Some of my friends and family are dissatisfied with my treatment results up to now and want me to get other opinions, but I have not done that yet. I think my doctor is following the protocols for treatment that his experience dictates. Maybe I'm wrong. I feel a little worried about this, but I trusted him completely until other people started questioning my treatment.

I wish you good luck in your treatment. Let me know how it goes.

I did not ask for a prognosis because I am scared to hear it and want to stay positive and hopeful. I know at this point my treatment is just putting out fires. There is no "cure" at this point, but if the docs can keep things from growing or getting too numerous and invasive to treat, maybe that buys me more time. I am operating on the assumption that it's not hopeless, even though I know the statistical prognosis is bad.

Simmons said:

Simmons is KarenHopeful
Not sure how I got switched to my last name. I think I may have logged onto this site in 2006 when my mother was diagnosed with stomach cancer. She only lived 6 months after her diagnosis. I got my uterine cancer in 2007, was told only a 5% chance of it coming back. DANG! Went 4 years 3 months before noticing anything. Had my scheduled CT scans, but none of my doctors were doing chest xrays. :-( Karen Hopeful Simmons

barbakamom said:

Uterine adenocarcinoma with mets to lungs
I also have uterine adenocarcinoma - stage 1c, no lymph node involvement - total hysterectomy in 2008 with 3 brachytherapy sessions. Told I was 99.5% cured. Then three years later, had two spots in my left lung - one 3 cm and one 4cm. By the time I had surgery to remove them, they had grown to 4cm and 5cm. Had a thoracotomy, with left lower lobe removed, and upper part resectioned, losing 1/2 of my left lung. This was followed by 3 sessions of carboplatin chemotherapy. I was allergic to Taxol, stopped breathing and ended up in ICU, so only carboplatin. But after 3 sessions, had to stop, since my platelets fell dangerously low. Am now monitored monthly for CA125 levels, and quarterly with CAT scans. CA 125 currently is a 7, down from a high of 90 pre-surgery. My next dr's appt is in 2 weeks, and each time I get close to my dr's visit, I start getting very anxious. But I am thankful to be working full time since June 2011, since I am single and support myself. But I am concerned about the day I may become too ill to work. Is anyone else working full time, too? I find it helps keep me busy....but I am fatigued, and find stress aggravates my breathing. Please send good thoughts my way for my Feb 15 appt... Thank you.