6 Wks, and Still No Treatment? Does It Take This Long???

WorriedAboutMom · Regular Joined: 14 Aug 2009 Posts: 14

My mom was diagnosed with Metastatic Adenocarcinoma on 9/11. The timeline since everything first started looks like this:

8/4...Went to primary doc for shortness of breath. Ordered lung x-ray that showed rt pleural effusion. Also ordered ultrasound of pelvis and abdomen.

8/7-8/9...Hospitalized to have fluid drawn. Removed 1200ml of bloody fluid. Did CT scan of lung after fluid removal and found 1 small nodule in rt lung that they said was NOTHING and they would check it in 3 months. Ultrasound of abdomen was clear, but ultrasound of the pelvis showed an enlarged rt ovary w/a golfball sized cyst.

8/11...Results of fluid were back and showed elevated markers: CA125-75, CEA-85, CA19-76.8. Apparently these were the only markers they tested for because they are assuming it is Ovarian Cancer, due to the cyst.

8/11-9/2...Had a myriad of tests to rule out possible sites, such as: mammogram, colonoscopy, gastro something or other (for the stomach, etc). Another lung x-ray. All of these tests showed nothing. Also went back and forth to the doctors to discuss all the test results.

9/2-9/5...Hospitalized for a complete hysterectomy. Cyst is benign. Everything they biopsied is clear. This doctor had said even before the surgery that the cyst didn't look like cancer (yet they did it anyway).
There is pleural effusion again, and they draw 1000ml of bloody fluid for testing. The doctors were not happy with the tests that were run the first time because they didn't test what they needed to see.
Since it wasn't ovarian cancer, they turned their attention back to the lung nodule that they had dismissed earlier. Apparently it wasn't just one, but 4-5 small ones. Two are possibly 1.5cm, but the others are smaller. They are on the outside of the lung. They decided to wait on a needle biopsy until they got the test results back.

9/8...Test results are in, but they wanted her to come in to discuss. Didn't sound good.

9/11...Doctor said the test results showed Metastatic Adenocarcinoma. They told her she has 3 months, 6 months, possibly a year, but only because she's so healthy right now!
Tested positive for these markers: CK7, BER-EP4, MOC-31, TTF-1, and negative for these markers: CK20, Calretinin, CK 56ER, GCDFP-15.
Those indicate most likely primary site as the lung.

9/24...Will finally be getting a PET/CT scan to see where it is and if it is anywhere else, and then after that, I will imagine they will still need to do a biopsy of the lung nodules.

10/5...She will meet with the doctor to discuss test results and what happens next.

So 6 weeks, and still not even getting treatment! And it will be 8 wks before she even gets to talk about treatment! Does it normally take this long? When you are measuring life in months, I would think there would be some urgency, no?

What's everyone else's timeline look like, from first symptoms to actual treatment?

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2403

It was probably 5-7 weeks, including a run of antibiotics and a wedge section biopsy, for my husband to begin treatment. That was from the first doctor visit. Eight weeks seems a little long, but they had a lot of testing and surgery to make a diagnosis in your Mom's case. Sometimes things are more clear cut than others and they want to put her on the best treatment for the type of cancer. I'm sorry --- I know how grueling this waiting is. I always found that and scans to be be the most stressful.

Let's hope they get on the stick a little faster and start treatment.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

divinechild

It is SO helpful to read this thread by both of you....THANK YOU SO MUCH..especially such a detailed account of how long it took for testing--diagnosis--starting treatment.

My dad first went to his cardiologist for his regular pace-maker check up and the doctor ordered some tests because he saw my dad had lost an alarming amount of weight since his last appointment 6 months before. That was August 9th. 3 days later the hospital called my father and informed him to be checked into the hosptial that afternoon as the doctor ordered more tests---blood test, sputum test....he refused the tube. He was in the hospital for all kinds of tests for 3 days and were released (this is in Hong Kong and I never got to see the report or talked to the doctor in Hong Kong to find out the details of the exact tests and results of these tests). He was told he needed a PET scan or CT scan in September and when one of our relatives in China suggested that he went to China before his next test and consult with some traditional Chinese herbalist. He flew to China in late August. Stayed for a month now and the herbs were not helping. Now he has decided to go back to Hong Kong to finish all the tests and see what kind of chemo the doctor thinks he should get on. He just started to have shortness of breaths and a difficult time of breathing about 3 days ago. Since the primary tumor in his lung is 4 cm all around and some smaller ones in the left lung, also spread to his diaphram maybe that's why he's having a hard time breathing and a friend whose mother passed from lung cancer told me maybe oxygen was going to make him feel better and helps with the breathing. He went to the hospital and got on oxagen for an hour and felt a whole lot better. but the doctor said he needs to be on oxygen 24/7 with short breaks because once the mask is off he's going to have a hard time breathing again until the tumor shrinks if he responds well to chemo and it's able to shrink it.

I just really wanna thank everyone especially PBJ, coyote, Danny and all the others for your support and your posts filled with so much info. I learned so much that helps me helps my dad in every way possible.

Thank you...

Blessings,

Shannon

[quote="WorriedAboutMom"]My mom was diagnosed with Metastatic Adenocarcinoma on 9/11. The timeline since everything first started looks like this:

8/4...Went to primary doc for shortness of breath. Ordered lung x-ray that showed rt pleural effusion. Also ordered ultrasound of pelvis and abdomen.

8/7-8/9...Hospitalized to have fluid drawn. Removed 1200ml of bloody fluid. Did CT scan of lung after fluid removal and found 1 small nodule in rt lung that they said was NOTHING and they would check it in 3 months. Ultrasound of abdomen was clear, but ultrasound of the pelvis showed an enlarged rt ovary w/a golfball sized cyst.

8/11...Results of fluid were back and showed elevated markers: CA125-75, CEA-85, CA19-76.8. Apparently these were the only markers they tested for because they are assuming it is Ovarian Cancer, due to the cyst.

8/11-9/2...Had a myriad of tests to rule out possible sites, such as: mammogram, colonoscopy, gastro something or other (for the stomach, etc). Another lung x-ray. All of these tests showed nothing. Also went back and forth to the doctors to discuss all the test results.

9/2-9/5...Hospitalized for a complete hysterectomy. Cyst is benign. Everything they biopsied is clear. This doctor had said even before the surgery that the cyst didn't look like cancer (yet they did it anyway).
There is pleural effusion again, and they draw 1000ml of bloody fluid for testing. The doctors were not happy with the tests that were run the first time because they didn't test what they needed to see.
Since it wasn't ovarian cancer, they turned their attention back to the lung nodule that they had dismissed earlier. Apparently it wasn't just one, but 4-5 small ones. Two are possibly 1.5cm, but the others are smaller. They are on the outside of the lung. They decided to wait on a needle biopsy until they got the test results back.

9/8...Test results are in, but they wanted her to come in to discuss. Didn't sound good.

9/11...Doctor said the test results showed Metastatic Adenocarcinoma. They told her she has 3 months, 6 months, possibly a year, but only because she's so healthy right now!
Tested positive for these markers: CK7, BER-EP4, MOC-31, TTF-1, and negative for these markers: CK20, Calretinin, CK 56ER, GCDFP-15.
Those indicate most likely primary site as the lung.

9/24...Will finally be getting a PET/CT scan to see where it is and if it is anywhere else, and then after that, I will imagine they will still need to do a biopsy of the lung nodules.

10/5...She will meet with the doctor to discuss test results and what happens next.

So 6 weeks, and still not even getting treatment! And it will be 8 wks before she even gets to talk about treatment! Does it normally take this long? When you are measuring life in months, I would think there would be some urgency, no?

What's everyone else's timeline look like, from first symptoms to actual treatment?[/quote]

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