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Got bad news and need some help!

BarbaraDe
Posts: 18
Joined: Oct 2013

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,

 

ccfighter
Posts: 379
Joined: Jan 2012

Hi Barbara,

I'm sorry that you are dealing with a recurrence of your cancer.  Please also check the uterine boards and the gyn boards.  There are many women there going through similar situations.

im sorry I cannot answer your questions about sloans decision not to do chemo with your radiation.  It is pretty standard for cervical cancer but I am not so sure about uterine.  Certainly you should have been having follow up scans, although some doctors think symptoms will typically precede scan timing and wait for symptoms to arise.

chemo is no fun, but you will make it through.  Probably your chemo will be carbo/taxol or cisplatin/taxol.  The taxol will cause hair loss.  The cisplatin and carboplatin are nauseating but they have wonderful drugs to deal with that.  You will be fine.

I can't comment on cancer treatment centers of America.  I have never been to one.  Hugs, good luck and remember you are a statistic of one.  All the other statistics are meaningless for you.

dennycee
Posts: 666
Joined: Mar 2011

This list is from the ACS website.  If you print it out it has room to write their answers.  Not all the questions are appropriate so check them.  I am not familiar with the protocol for cervical cancer.  If I were in your position, I would insist on a bone scan and an MRI of the brain to be safe. 

The difference between 7 mm and 8 mm is very small and may just be the interpretation of the radiologist reading it, especially since the first one was not a chest scan.  Placement of the body can also cause it to appear different when its that small.  That's smaller than 4/100 of an inch.  

I know very little about CCA other than they dont take many insurances and they have very high copays.  If you are thinking of going, do give them a try.  You have to have faith in your oncologist so do find one you like.  

http://cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf

 

dennycee
Posts: 666
Joined: Mar 2011

The chemo drugs they use for cervical cancer and standard protocols can be found at this link.  Also, if you don't have a port for the chemo ask for one!

http://www.cancer.gov/cancertopics/druginfo/cervicalcancer#dal2

Audie215
Posts: 2
Joined: Jan 2014

I am so sorry to hear what your going through but wanted to let you know that cancer treatment of America is a wonderful option. My mom is in advanced stage cancer and that is their speciality. we live I'm the philadelphia area and are fortunate that it's close by for us to go to. I would highly recommend you getting more info or at least a consultation. I would be happy to provide you with more info if you'd like to connect off line. Praying for you! N

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