Got bad news and need help!

BarbaraDe
BarbaraDe Member Posts: 18
in Uterine/Endometrial Cancer #1

Hi.  Eighteen months ago I had uterine and cervical cancer.  I was treated at Sloan but never had any follow-up scans, even though I went to all my follow-up appointments.  In the last week of August, I was having some diarrhea and a doctor in Jersey ordered an abdominal scan. The results showed that there was a 2 mm nodule in one of the lower lobes of my lungs and a 7 mm nodule in the other.  Because the scan was not a chest scan, the Jersey doctor told me to go for a full chest scan.  Two weeks after the first scan, the second scan showed I had 16 bilateral nodules, and the 2 mm nodule had grown to 3 mm, and the 7 mm nodule had grown to 8 mm...in just two weeks!!  It also showed a nodule on my thyroid and one on a lymph node near my pancreas.

 

I went for a PET scan two weeks after that, then this past Wednesday, October 23 rd, I had a biopsy of my lungs from a thoracic surgeon at Sloan.  The surgeon said the nodules are malignant.  I have a post-operation conference with the thoracic surgeon this Friday.  I am not sure what to ask him, though.  When we met before the surgery, he said if the nodules were malignant, surgery would not be an option because there were too many nodules and they were of so many sizes.  He said they would have to cut out too much of my lungs and he would worry they might miss some smaller ones.  He said that the treatment would most likely be chemo.  He also said that the gynecological oncologist would be calling the shots because, even though the cancer is in my lungs, it is still uterine cancer.

 

I don't know what questions to ask the doctor this Friday, so if anyone had any suggestions, please let me know.  Obviously, one question is prognosis.  I know that may seem maudlin, but everything I have read says that metastasized uterine cancer to the lungs has a very poor prognosis.  I know we can read too much sometimes, but I don't know where to turn!  I have questions about chemo...what kind...how often do you have to go...how sick will you get??  I just don't know what I should be asking the doctor this Friday.  Any help would be greatly appreciated!

 

Also, has anyone heard anything about Cancer Treatment Centers of America?  I am kind of losing faith in Sloan for several reason...including not having any scans after my surgery, even though it was 19 months!!  Also, they tested four lymph nodes and they were clear, but there was cancer in the lymph ducts.  Why did they only do radiation and not chemo??

 

Any feedback would be greatly appreciated!

Thanks,

 

Comments

  • survivingsu
    survivingsu Member Posts: 134 Member
    #2
    Hi Barbara De

    Hi Barbara.  I'm no expert - but I care!  I also realize everyone's different, so it's logical that treatment will vary too.  I had a rare uterine cancer (undifferentiated small cell carcinoma) 4 years ago...they scanned me all the time!  After I had my chemo & radiation (external & internal) treatments simultaneously and then surgery, they still scanned me on a regular basis.  Every 3 months I had CTs with contrast, and if they saw something they would order a PET scan.  I had a few scares which turned out not to be recurrence, but the staff is ever-diligent about the possibility.  As time went by the every three month scans changed to every six months.  Right now I am at once a year scans, as long as labs/tests are normal and I do not have any symptoms.  If you are looking for another place that does an excellent job treating this kind of cancer, I can tell you that I am pleased with the care I get at the Seattle Cancer Care Alliance and the University of Washington Medical Center. 

    I wish you the very best of care,

    Please feel free to ask me questions if I can be of any assistance,

    Susan

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #3
    what to ask ...

    Hi BarbaraDe,

    I'm sorry you are faced with this.  I'm merely taking a stab at what your situation may be at this time.  If your only treatment after surgery was radiation, it seems you probably had an early stage, low grade cancer.  I'm hoping that your cell type was endometrioid adenocarcinoma.  That is what I had and a gynecologist friend said that "that is the one to have" meaning that it is the most treatable.  I'm sure you will get full carbo + taxol chemo like lots of us have had. 

    On the follow up issue.  If you are uncomfortable with your former oncologist, you need to find a new one.  I would stick with Sloan, but I would definately get a new doc and tell the new one why you switched.   

  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    Barbara

    Sorry to hear about the recurrence, but know we can endure.  At times it takes another round of chemo to get it...darn it!  I've been a 4 yr NED uterine cancer suirvivor which have a recurrence in September. I'm in same boat with you, but mine came back in the lymph nodes and no where else.  So, in treatments and keeping the faith all will work out great in the end.

    In my case it came back in the neck node which I found one day, and went to my GYN oncologidt whom told me this isn't his area of expertise.  Sent me to an ENT specialist whom did the PET and found yes it's cancer.  The treatments are all directed by my original GYN Oncologist asd he knows my history and is the same cancer from '09 - uterine. As in my case they cannot remove the lymph node as close to jugular vein and many nerves, as well have 3 other nodes further in the body, so best option is chemo to ZAP IT ALL.  Will agree with not doing surgery on lung as you have more nodes and can't possibly remove them all.  Chemo will hit them all and sounds like best option.

    Questions to the doc on Friday -- I never have asked my doc about prognosis as I don't like to think that way.  Remember we're all a statistic of one, so why view all the big statistical charts....too scary!  As you'll read on this site, many people are staged 4 and have been survivors for more years then they were told by the docs...why go there is my attitude, but you do what's best for YOU.  So much of the chemo type protocol depends on the cancer type.  With me they did a biopsy of the cancer in my neck node and sent to a company out of state for an assay.  This assay will test different chemo drugs and how they react to the cancer cells...this inturn, recommends the BEST CHEMO DRUGS TO USE.  Not all docs do this procedure, but suggest to ask about this setup.  

    Cancer Treatment Centers of America?  I've not used them and probably will never as have a good friend whose wife works in their Arizonia office.  I've heard many stories about their tactics of bascially viewing people according to their means of paying for their services....basically a FOR PROFIT outfit.  Surely someone on our site has used them and can give you another suggestion and can relay some good results.....knowing my side isn't the end all story.

    Hope this was somewhat helpful and know we're here for you, so keep asking questions.....

    Jan

  • soromer
    soromer Member Posts: 130
    #5
    It's not easy--but try not to be scared.

    I had lung mets following 6 months of chemo. They were discovered through a CT scan just before I was supposed to have radiation. With the discovery of the lung mets, though, radiation was off.

    My lung mets were also diffuse: 8 total, in both lungs, the largest 8mm in that first scan. That also made surgery moot.

    When I heard that news, in September of 2011, I was terrified and thought I was going to die soon. All I read about lung mets was pessimistic. My oncologist wanted to put me on Megace, because my tumors were strongly estrogen and progesterone positive, and though I agreed to do so I thought it was a palliative move at best.

    At that point, I started the Megace but I also started a lot of complementary therapies, primarily Ayurveda, acupuncture, and meditation. The combination worked: my first scan after the nodules were detected, half were no longer visible and the other half had decreased in size by about 50% each. By the third scan, I was NED, and I've remained so for over a year and a half now.

    Don't give up. Look for a new doctor or a second opinion. You are not out of options, and it is not all over for you.

    PS--By the way, I do not hear good things about CTC of America. They are a for-profit racket from all I can tell. One of the women in my support group went there for treatment of Stage IV bile duct cancer. They tried one thing for her, and when it didn't work, that was it. No more interest from them. You're much better off either with a comprehensive cancer center like MSK or using complementary therapies that make sense to you, or both.

    Good luck!

     

     

     

     

  • SUNGRANNY
    SUNGRANNY Member Posts: 81 Member
    #6
    Questions and tape recorder

    Sorry to hear of your situation.

    I make a list of questions before each Dr visit.  I used to be almost frantic about assembling questions ahead of time, but now,  If I don't have anyone to go with me to am appointment and take notes I bring a little digital tape recorder.  I explained not the doc, and there wasn't a problem.  That way I can play it back later,  and if I have questions I can call or email (radiologist prefers email; oncologist prefers calls tot he nurse.) This way I can pay attention better during the appt.

    I had a second, and even a third opinion at one point.  It's your body and your life.  You have the right to speak up for what you want and need.  

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