New Here, Need Advice Please

carolbell · Posted: Wed Aug 13, 2008 5:37 pm Post subject: New Here, Need Advice Please

Hi all. I have been lurking around here since April 18th 08. My the stuff you ladies and gentelmen have been thru. I pray for you all. My question is this. I was diagonised with DCIS in April. HER2+, High-Grade Aggressive breast cancer. Had a lumpectomy about 4 cm was removed. I then had 30 rads and 5 boosters. I went to the cancer center for my 1 month checkup and the doctor said it was gone. CURED. no follow up for 6 months , no tamoxifin, no nothing. I didnt have any test run not even an x-ray, no bloodwork, notta, zip, nothing. So what i want to know is " HOW DOES HE KNOW IM CURED"??? What should i do? Should i have more test run somewhere? Should i just take him at his word ? im very confused. Thanks in advanced for your replies.
Carol B

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 796 Location: UK

Hi - It seems that they caught the cancer early enough to eliminate existing cancer cells. So in that sense your cancer is "cured". "No Evidence of Disease" [NED] is another way that they put this.

Do you know if your cancer was oestrogen positive or negative?

carolbell · Posted: Wed Aug 13, 2008 7:28 pm Post subject: Re: New Here, Need Advice Please

Hi Vee, thanks for replying so fast. i am estrogen positive. does that make a difference?

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 796 Location: UK

Hi,Carol.

The only comment I would make is that over here, with oestrogen positive, Tamoxifen is often given as a preventative. You might like to ask your doctor at your next check-up why they have not prescribed it. You didn't mention your age, and that may also be a factor in their decisions.

In the meantime, relax, live a good life and enjoy!

brainman · Posted: Thu Aug 14, 2008 5:57 am Post subject: Re: New Here, Need Advice Please

Carol, along with the lumpectomy, did they check any lymph nodes? If so, what was the result?

Here in the US the complaint usually is that we over test people. It does sound strange that your doctor would not do other tests and scans to rule out metastatic growths.

I too am in Tennessee. Which cancer center did you go to? I am just trying to understand why they did not do other tests. Confused

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carolbell · Posted: Thu Aug 14, 2008 7:24 pm Post subject: Re: New Here, Need Advice Please

hi again, thanks for replying. I am 41. i went to the Cancer Care Clinic in Jackson Tn.The Doc told me that the statistics say that i dont need other test. That women with my type usually get cured and it never returns. He says just to follow up with my PCP in about 6 months. He doesnt even recommend the Tamoxfin. Just believes Im cured. Which is what i wanted to here. But i believe he should have at least done sone kind of test to back up his diagnosis of being CURED. My lymph nodes were not checked because the tumor was so small, 2 cm. anyways thats all i have. thanks again.
Carol B

mymaria · Experienced user Joined: 28 Feb 2008 Posts: 57

carolbell,

This is the most peculiar thing I have ever heard. Well, if the statistics are in your favor, that does not mean that you are free from the cancer! Statistics? I can't believe that was the explanation he gave. That, sorry to say, should not be acceptable.

Let him know that you want a scan that is a much more reasonable indicator of the absence/presence of cancer than just statistics. In this medical case, I believe doing a scan that may be construed as unnecessary is worth doing anyway. He cannot guarantee w/o such a test/scan that all of the cells have been eradicated. Also, the cells were estrogen+. What is to stop the cells from becoming active again w/o hormone inhibition?
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brainman · Posted: Fri Aug 15, 2008 5:22 am Post subject: Re: New Here, Need Advice Please

Carol, I agree with mymaria... it is highly unusual for a doctor to base decisions solely on statistics... especially in the US where the tendency is to over test.

I do not often say this, but I think that if I were you, I would get a second opinion either at Vanderbilt or at Baptist Hospital in Memphis.

When dealing with any cancer it is better to be safe than sorry.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Cindy · Senior User Joined: 01 Dec 2004 Posts: 167

Carol, I think what doc it trying to tell you is that in your instance further treatment is not necessary because the cancer cells never came out of the duct. They took tissue all around the duct to see if any had come out or spread and they couldn't find any. Under those circumstances, they would not do chemo or rads or give you inhibitors. There is no treatment to give for something that is not there. If it did not spread outside of the ducts then it would not be in your system. It was contained. Any treatment would have been like calling out a whole fire squadron to put out a fire that is contained in a garbage receptacle. If the fire never got out of the can, there is no danger. I hope this makes sense. They will probably watch it very, very closely. You are very lucky to have that diagnosis. While there is no cure for cancer, he is just meaning that there is none remaining. No evidence of disease (NED). Many blessings.
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