Looking for answers!

BarbaraDe

Hi.  I happened upon this website by chance.  After reading some of the postings I decided to join.  I have so many questions that my head is spinning and I do not know where to turn!  Please help if you can!  (Thank you in advance!)

 

I was diagnosed with uterine cancer on January 23rd, 2012.  I had a radical hysterectomy on March 1st, where they told me that I also had cervical cancer.  I had five weeks of external radiation and three weeks of internal radiation.  Everything seemed to be going well, but I was still having some diarrhea.  I went to an internist who thought I may have gallstones and he ordered an abdominal CAT scan.  Even though it was not a chest CT, it showed that there were two nodules on my lower lobes; a 2 mm one on one lobe and a 7 mm one on the other.  I went for a chest scan two weeks later.  The 2 mm one had grown to 3 mm and the 7 mm one had grown to 8 mm.  In addition, it showed “multiple bilateral nodules”…16 in all, of various sizes and in both lobes.  I also had a PET scan.  My internist said the PET scan was good and that nothing was malignant, but I still sent all the reports and the scans to my gynecological oncologist.  She said she believed the uterine cancer had metastasized to my lungs and sent me to a thoracic surgeon.  Long story short, I am having a biopsy on October 23^rd, laparoscopic surgery. 

 

Here are some of my questions. 

 

The Internet can be a good thing…or a horrible thing!  Most things that I have read about uterine cancer that has metastasized to the lungs say it is a very poor prognosis…is that true???

 

If it is in the lungs, is it “lung cancer” or “uterine cancer”?  And what is the difference?

 

I never had a scan from my oncologist after the surgery (19 months ago)!  IS that common or should they have scanned me sooner…and if they did, would there maybe not have been so many “nodules”???

 

Both the thoracic and gynecological surgeons have said that they believe that the “nodules” are malignant (before the biopsy).  The thoracic surgeon said that he would do the biopsy but that since it is gynecological cancer, the other dr will determine the course of treatment.  He said the most likely course of treatment would be chemo because there are too many nodules for him to remove safely.

 

HELP!!  Many more questions but that is it for now so I can hopefully get some insight and answers form those who are going through this! 

 

Thanks for your help!!!

Lothose

So sorry to hear that you are

So sorry to hear that you are having to deal with all of this.  You are in my thoughts and prayers.

As to your questions... I am like you - looking up a lot of stuff on the internet.  I don't know about the prognosis being better or worse based on it moving to the lungs.  However, I did come across something that said if the uterine cancer metastesizes to the lungs or other organs - it is still called uterine cancer - not lung cancer.  If it is completely unrelated to the uterine cancer it would be lung cancer though.  This little tidbit made me giggle a bit when I thought about have uterine cancer of the lungs.. it just sounded really funny to me for some odd reason.  Glad to know that little bit of trivia came in handy to know.  As for what the difference is - I could be completely wrong on this but based on what I know of lung cancer it is more dangerous than uterine cancer.  Therefore if it is lung cancer that would be more difficult to treat than uterine cancer of the lungs. 

When you are asking about scans are you specifically meaning PET scans?  If so, from what I understand a lot of insurance companies don't authorize PET scans unless there is some warranted reason for it that can't be found through other tests.  For that reason, I don't think its odd that you didn't get a PET scan sooner.  If you mean any other form of scans - that would depend on your stage and grade of cancer I believe.  The grade and stage of your cancer would also determine how fast things spread... so its possible it might not have spread to so many nodules - but no way to know what you might or might not have found had the scan been done earlier.

I hope this helps.. And if anyone reads this and is like "This girl doesn't know what she is talking about" please feel free to correct me.  Like many on this site I am still learning about all this and may misunderstand some of the more complex issues because of that.

 

Lisa 00

I'm pretty sure it's the

I'm pretty sure it's the 'standard of care' to look for metastases when you are first staged.  I had a whole body PET scan shortly after my surgery.

soromer

Lots to learn....

Sorry you're in this predicament, BarbaraDe. I hope that you can get some answers -- and some treatment! -- that helps you.

First, regarding the metastases to the lungs: Yes, that is not a good sign. BUT, it's not impossible to get better from that situation all the same.

I had metastases to my lungs after chemo treatment but before I had any radiation. The eight lung nodules (in both lungs) were discovered six months after my hysterectomy, in Sept. 2011. And I also thought it was all over at that point, but I decided to fight back hard anyway. My oncologist recommended that I take Megace, a progesterone, since my tumor cells were strongly positive for progesterone and estrogen. I started that right away. I also started a whole regime of complementary treatments, especially Ayurveda and acupuncture, but also yoga, qi gong, dietary changes, deep breathing, meditation, visualization, and Reiki. These all helped enormously.

By the next scan, in December of 2011, I had notable decrease in all the nodules. By two scans after that, in June of 2012, they were all gone. I've been in NED status since.

The moral of my story is not to give up hope, to keep asking questions, and to believe you'll find a treatment that works for you.

About your other questions:

Lothose is right, that if it's a metastatis from your uterine cancer, it's considered to be uterine cancer no matter where it goes. (That said, I am curious whether you actually had cervical cancer in addition to your uterine cancer, or whether your uterine cancer had spread to your cervix.) Uterine cancer tends to travel to the lungs, liver, and brain as I understand it, generally in that order.

I would agree with your thoracic surgeon that lung resections are probably not called for if there are a lot of nodules. I have heard of women having major lung surgery to remove whole lobes with nodules, but it sounds like that wouldn't be helpful for you in any case. 

It does surprise me that you never had an original CT scan to serve as a baseline in reference to later treatment. I had one shortly after my hysterectomy and before I started chemo.

If you haven't had chemo already, there's a reasonable chance that it will work for you. HOWEVER, please discuss with your doctors the possibility of doing a chemosensitivity assay with some of the tissue they biopsy from the lungs. Not all docs or centers do this, but some do. It's a method of screening out what appear to be ineffective chemotherapies based on the response in a petri dish of your particular tissue samples to various chemo drugs.

You also might be a good candidate for a clinical trial, but that's also something to undertake after a lot of research and reflection and discussion with your docs. I investigated that possibility for myself but wasn't eligible at first, since my nodules were too small (under 10 mm). I'm relieved I don't have to think about that possibility now myself, but they are out there.

You don't say anything about the type of cancer you have, or its grade or stage. That's important information to know, since the behavior of the cancer varies according to those factors.

I wish you courage, strength, and luck. Please keep us posted.

Peace,

soromer