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Questions re: Counts and more

califdreamin
Posts: 11
Joined: Jul 2001

I recently reconnected with several old friends through Classmates.com, one of whom has advanced breast cancer. If I tell you what I know (which in retrospect doesn't seem like much), maybe someone out there can enlighten me. I feel very uncomfortable "pumping" her for information everytime we talk - which I'm sure you can all appreciate.

My friend is 57. She was first diagnosed with breast cancer in 1996 (don't know what stage or other specifics). The cancer returned in 1999. This time it metastacised to her liver. She underwent 6 months of treatment and the spots on the liver pretty much disappeared.

At one point a couple months ago she said something about her counts having gone "from 27 to 35 in less than 3 months". Last month, she said they had tripled and she was going to have to start on a different type of chemo. When I talked to her last week, she said her counts are still climbing. The new chemo doesn't seem to be working.

And speaking of working, the doctor made her quit her job in April. She's now working part time in her husband's office - just so she doesn't have to sit home alone and feel sorry for herself. I don't know how much longer she's going to be able to do that, though.

From what I understand, her cancer has NEVER gone into remission. On top of that, she has some kind of "spots" on her spine which have gotten "brighter" on her x-rays but not bigger.

Now for the questions -

From what I've read on these boards, "counts" refers to tumor markers and blood work....but WHAT EXACTLY DOES THAT MEAN??

What is considered "normal"? Is 35 "high"?

Is it possible that she's really NEVER been in remission all this time?

She wasn't ready to quit working, but the doctor insisted. Why do you think he did this?

What are the "spots" on her spine? Could this be additional mets? Apparently the doctors have not taken any aggressive action (ie: surgery, biospy) on them. Could they be tumors or something else?

I'm sorry this is so long, but I have more questions than I know what to do with....and I don't know where to turn to get the answers. I've searched the internet and stumbled on this site quite by accident. You all seem so knowledgable and supportive, I thought I'd give it a try.

From a personal standpoint, I've had three breast biospsies in the past couple of years - all of which have been benign so far. So between my own experience and reconnecting with my friend, I'm hungry for all the information I can get. I hope you all can understand what I mean.

Thank you in advance for any answers you can provide.

bdean
Posts: 262
Joined: Feb 2001

I reconnected with a childhood friend of mine when I was dx. with cancer. Her Mother had it many years ago, and I knew she would want to talk. She just asked me straight out if I would mind all her questions because so much had changed and she wanted to be as aware of what was going on with me as she possibly could. I didn't mind at all answering all of her questions, and there were a lot. Your friend will probably feel the same. I will try to answer some of these as best as I can.
The brighter spots on her spine could be an indicator of bone mets--not absolutely, but could be. My onco. refers to bright spots as 'hot' spots. My doctor does not use tumor markers so I am not familiar enough with counts to advise you. I know when they go up it means cancer is not responding, maybe getting more aggressive. Going back to spine--the doctors probably will not do anything aggressive about them; maybe Aredia if it turns out to be cancer; if she is in pain--maybe radiation to those spots.
Once cancer has mestastasized, surgery is a last ditch effort to give relief and stop unusual growth, so it is rare for them to do so. All tumors can be different and doctors view treatments in different ways--her doctors may do things very differently from mine. Her doctor probably made her quit working because of low white blood counts.(White cells fight infections in one's system). You are very vunerable to infections when on chemo and have low counts. She needs to save her energy.
As far as being in remission- it depends on how you interpret the word. I do as-- symptom free. It doesn't mean cancer is completely gone - because there is no test that can prove this 100% - but that there is no longer any activity. Cure should mean that doctors believe that body is totally clean and clear of any more cancer cells. As I said I do not know how they can make that promise without a much better and more accurate blood test.
According to a scientist on a NOVA program I was watching, one malignant tumor, no more than 1 centimeter in size, can express millions of cancer cells--the immune system and cancer drugs hopefully kills all of them; but sometimes a few stubborn cells can go dormant for several years, hiding somewhere that doesn't show up--then for some reason they will reactivate months or years later.
Sometimes, a person with cancer does want to talk about her treatments and problems, but is afraid to do so in case, their friend doesn't want to hear about it. Do let her know that you are only asking questions so you will know what she is going through since you are not familiar with chemos, markers; scans, etc.
May God be with you and your friend.
Brenda

califdreamin
Posts: 11
Joined: Jul 2001

Thank you Brenda. I'll try to work up my courage next time I talk with her. I just don't want all of our visits to be consummed with me asking questions about her illness and her feeding me answers in return. I'll work on it though. I promise.

Thank you again for your response.

CalifDreamin

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

The counts referred to are protein marker counts. They are much the same as PSA counts in men with prostate cancer. In breast cancer the protein marker is CA15-3. The normal count in a non cancer patient is less than 20. They rise as the amount of cancer present increases. Mine were 190 on diagnosis of metastatic disease last year. They dropped to 60 but started rising again at Xmas when hormone medication failed. They have since risen to 170 but since being on chemo they are starting to drop a little. Not all doctors use marker tests but realisation is coming that in some women they are a very good indicator of the state of her disease. In mine they are spot on everytime & as they rise a new tumor pops up. The bright spots are probably what my oncologist calls hot spots and are signs of metastatic disease in the bones. A full bone scan shows these up. but an MRI or CAT scan is needed to determine the size. Metastatic diseas is not operable as the sites are often too numerous & once in the bones new ones pop up all the time. Chemo is the best attack. I am stage 4 and know that I have a big battle on hand to slow the course of the disease but I'm trying everything there is out there. Hope this has answered some of your questions.

Love Pam

califdreamin
Posts: 11
Joined: Jul 2001

Pam - I just realized someone else reponsded to my query. YES! You answered my questions! Those were EXACTLY the answers I was seeking. Thank you so much - and God bless you as you continue your treatments.
CalifDreamin

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