I'm Worried.....

mgm42

I read the postings about blood work, markers, CT scans, PET scans, etc. I've had none of that. I had a lumpectomy, done chemo (4 rounds of T/C) had 33 rad treatments (no node involvement). I go back on the 18th to see my surgeon and have a mammogram, but that's it. Should I be asking for some kind of test/s? Now I'm very worried that the doctors and the cancer center that I trusted so much may not be as on the ball as I thought they were. Any comments? Thanks. Marilynn

Joycelouise

I had the ct scan and pet scan at the beginning of my treatment to determine if the cancer had spread visibly to the bones or organs. I have never had a markers test to my knowledge and have the same question as you, Marilyn. Perhaps since you had no nodes positive, the likely hood of spread was ruled out (I had two). I am going to ask my doctor some of the same questions you asked, though. And read the responses. Please don't worry too much, Marilyn. Take chemo girl out for lunch. love, Joyce

Unknown

Are you saying that they have not drawn blood during any of your treatments or chemo visits? If they have, then they are keeping track of this stuff even if they are not reporting it to you (which means their findings are within normal ranges or they would tell you and suggest other treatments). As for the scans, it it usually abnormal blood work that points to the need for scans and other tests.
Having said that, let me add, if you are the LEAST BIT worried, forget everything I just said and DEMAND on your next visit to be given all test result and ask questions about scans, etc until you feel completely at ease about the treatment you are getting. We have enough to keep us awake at night as it is.

cabbott

I go to a leading breast center and think the world of my oncologist. He told me when I was just a year or two out from surgery that he will only do all those tests if and when I developed symptoms. I asked "Why not now?" ( and of course, "What kind of symptoms?"). He said the research showed that doing tons of tests or even one marker test or scan did not prolong survival or disease-free reoccurance. Each test has its own side effects (some of those scans cause some cancer as well as find it you know!) and if they aren't really needed the side effects aren't worth it. He is really into the research. As for the symptoms, they were any signs of mets: bone pain that doesn't go away, an unexplained lingering cough, a lump that shouldn't be there, unexplained headaches that don't respond to drugs, abdominal pain, and so forth. When I developed a cough that didn't respond to antibiotics or the passage of time, I got the chest x-ray that led to him ordering a PET/CAT scan. He followed up then with a CAT scan 3 months later that showed something growing on my lung. He was puzzled how the kind of cancer I had metasticized since it usually just shows up on the other side (I'm waiting for that boot to drop), and called for a lung biopsy. Low and behold, it ended up with me being diagnosed with lung cancer, stage one A. Tests may have caught it a year or two earlier, but then again, maybe they would have jumped to the conclusion that I had stage 4 breast cancer and put me on the wrong meds and skipped the lung surgery altogether. If that had happened, I not only would have done chemo for no good reason, I also probably wouldn't be here in a few short years. Surgery is considered curative at the stage of lung cancer I'm in, not chemo. So don't be surprised if your doctor also believes in waiting for symptoms to develop. If that is their philosophy, rest assured they will be on top of any "symptoms" you develop like ants on honey and you will get tests galore should you ever develop problems down the road.

mgm42

cabbott said:

I go to a leading breast center and think the world of my oncologist. He told me when I was just a year or two out from surgery that he will only do all those tests if and when I developed symptoms. I asked "Why not now?" ( and of course, "What kind of symptoms?"). He said the research showed that doing tons of tests or even one marker test or scan did not prolong survival or disease-free reoccurance. Each test has its own side effects (some of those scans cause some cancer as well as find it you know!) and if they aren't really needed the side effects aren't worth it. He is really into the research. As for the symptoms, they were any signs of mets: bone pain that doesn't go away, an unexplained lingering cough, a lump that shouldn't be there, unexplained headaches that don't respond to drugs, abdominal pain, and so forth. When I developed a cough that didn't respond to antibiotics or the passage of time, I got the chest x-ray that led to him ordering a PET/CAT scan. He followed up then with a CAT scan 3 months later that showed something growing on my lung. He was puzzled how the kind of cancer I had metasticized since it usually just shows up on the other side (I'm waiting for that boot to drop), and called for a lung biopsy. Low and behold, it ended up with me being diagnosed with lung cancer, stage one A. Tests may have caught it a year or two earlier, but then again, maybe they would have jumped to the conclusion that I had stage 4 breast cancer and put me on the wrong meds and skipped the lung surgery altogether. If that had happened, I not only would have done chemo for no good reason, I also probably wouldn't be here in a few short years. Surgery is considered curative at the stage of lung cancer I'm in, not chemo. So don't be surprised if your doctor also believes in waiting for symptoms to develop. If that is their philosophy, rest assured they will be on top of any "symptoms" you develop like ants on honey and you will get tests galore should you ever develop problems down the road.

Thank you all. I was given blood tests prior to each chemo treatment. I thought it was only to test for white blood count. I guess I don't ask enough questions. Right now I feel fine and have no symptoms of anything. I hope it stays that way. Thanks again. Marilynn

chenheart

Marilynn, every 3 or 6 months, when I see my oncologist, I have blood drawn one week prior to that appointment. At my Dr visit, he tells me how I am doing~ what my markers are, liver function, CBC, etc etc. Sometimes it is a fasting blood draw ( if he wants to check my cholesterol and/or sugar levels) but mostly it is not a fasting blood draw. I have only had a few other diagnostic tests~ an MRI before I started treatment to see if the other breast was affected, and and MRI after 5 years, at which time my surgeon released me back into the general population, so to speak. I now am a regular pt, and get a mammogram once a year. I have never had a CT or PET scan, as there has been no reason to. I have had 3 bone density tests, as the Arimidex is known to thin bones.

So, if you have your blood drawn before you see you Dr, they have your markers, etc. Why he isn't telling you how you're doing is another story! ASK! Ask what "normal" markers are, and where yours fall in the range, etc.

Hugs,
Claudia

Joycelouise

chenheart said:

Marilynn, every 3 or 6 months, when I see my oncologist, I have blood drawn one week prior to that appointment. At my Dr visit, he tells me how I am doing~ what my markers are, liver function, CBC, etc etc. Sometimes it is a fasting blood draw ( if he wants to check my cholesterol and/or sugar levels) but mostly it is not a fasting blood draw. I have only had a few other diagnostic tests~ an MRI before I started treatment to see if the other breast was affected, and and MRI after 5 years, at which time my surgeon released me back into the general population, so to speak. I now am a regular pt, and get a mammogram once a year. I have never had a CT or PET scan, as there has been no reason to. I have had 3 bone density tests, as the Arimidex is known to thin bones.

So, if you have your blood drawn before you see you Dr, they have your markers, etc. Why he isn't telling you how you're doing is another story! ASK! Ask what "normal" markers are, and where yours fall in the range, etc.

Hugs,
Claudia

I am getting confused between the information on how the body is coping with chemo (white blood cell, liver function, bilirubin, etc) and what I thought was a Tumor Marker test, that is in my perhaps confused mind, a test of how many cancer products or biproducts are in ones blood. Isn't there some kind of test like that they give people fighting to reduce tumors? Guess I have some more reading to do! And Cabbot, that reply was very intelligent. Love reading your medical takes. Joyce

seof

I always say, ask your Dr, ask your Dr, ask your Dr. After he/she has answered your question those 3 time, ask again, if you still don't feel like you understand. Then, guess what I do after I have asked the 5th time? Ask again! I would rather have a frustrated Dr. who gets tired of trying to find new ways of explaining things so that my brain can take it in and keep it in than to feel afraid and unsure of whether he/she is taking care of me. It took a little while for my Dr. and I to learn to communicate, but after nearly 2 years with him, we do much better (I usually only have to ask the same question twice now before the answer stays in my head) I also read, and I write down my questions and take notes on the answers, then summarize my notes while I am with him to be sure I understand. You may not be a slow on the uptake as I am, but you should definitely do whatever you need to to feel like you and your Dr. are on the same page.

Best wishes, seof

mgm42

seof said:

I always say, ask your Dr, ask your Dr, ask your Dr. After he/she has answered your question those 3 time, ask again, if you still don't feel like you understand. Then, guess what I do after I have asked the 5th time? Ask again! I would rather have a frustrated Dr. who gets tired of trying to find new ways of explaining things so that my brain can take it in and keep it in than to feel afraid and unsure of whether he/she is taking care of me. It took a little while for my Dr. and I to learn to communicate, but after nearly 2 years with him, we do much better (I usually only have to ask the same question twice now before the answer stays in my head) I also read, and I write down my questions and take notes on the answers, then summarize my notes while I am with him to be sure I understand. You may not be a slow on the uptake as I am, but you should definitely do whatever you need to to feel like you and your Dr. are on the same page.

Best wishes, seof

Thanks. You are sooooooooooooooooo right! Hugs, Marilynn

Joycelouise

mgm42 said:

Thanks. You are sooooooooooooooooo right! Hugs, Marilynn

Marilyn, I called the ACS hotline and asked these questions. It was SO useful. The person on the phone was very patient and knowledgeable. She said there is a Tumor marker test that looks for a specific protein (can't remember the name, an abreviation with C and a number in it) that MIGHT indicate a tumor. However, false positive are recorded and also the tumor has to be pretty large and generally detectable by other means before it shows up on the tumor marker test. For that reason some docs. don't use them. At least that was my understanding of what she said. I have not had a tumor marker test and am not diagnosed with a tumor (since my mas). Keep asking more questions, I will too. Someday we will understand! Thanks for bring this up. Love, Joyce

Eil4186

Joycelouise said:

Marilyn, I called the ACS hotline and asked these questions. It was SO useful. The person on the phone was very patient and knowledgeable. She said there is a Tumor marker test that looks for a specific protein (can't remember the name, an abreviation with C and a number in it) that MIGHT indicate a tumor. However, false positive are recorded and also the tumor has to be pretty large and generally detectable by other means before it shows up on the tumor marker test. For that reason some docs. don't use them. At least that was my understanding of what she said. I have not had a tumor marker test and am not diagnosed with a tumor (since my mas). Keep asking more questions, I will too. Someday we will understand! Thanks for bring this up. Love, Joyce

As with Joyce, I am 2yrs out and have not had a tumor marker test, pet scan, cat scan etc...This is probablt because I had a stage 1 cancer, clean margins and no node involvement. I have had 3 MRIs and will continue to have yearly MRIs due to my dense breast tissue. I have also heard that the tumor marker test is not completely reliable and that the research shows that doing a bunch of tests a few times a year does not really accomplish anything. My doctors have said that the most effective way is to do physical exams and question the patient about any possible symptoms they may or may not be having. I have blood work at every 3 month visit with my oncologist but that I think is because I am in a clinical trial. I think you should ask questions if you are worried, but it sounds like your doctors are taking good care of you. Eil

mgm42

Eil4186 said:

As with Joyce, I am 2yrs out and have not had a tumor marker test, pet scan, cat scan etc...This is probablt because I had a stage 1 cancer, clean margins and no node involvement. I have had 3 MRIs and will continue to have yearly MRIs due to my dense breast tissue. I have also heard that the tumor marker test is not completely reliable and that the research shows that doing a bunch of tests a few times a year does not really accomplish anything. My doctors have said that the most effective way is to do physical exams and question the patient about any possible symptoms they may or may not be having. I have blood work at every 3 month visit with my oncologist but that I think is because I am in a clinical trial. I think you should ask questions if you are worried, but it sounds like your doctors are taking good care of you. Eil

Eil, you and I have similar dx. I was stage 1C, no node involvement, clear margins. I go in to see two of my doctors (rads and surgeon) on the 18th. You better believe I will be loaded with a new line of questions. Strange, but I thought I was so on top of things. Live and learn!!!!!! Thanks so much to all of you. Your research, experiences, and responses have helped me to try and be more thorough in my approach with my doctors. Thanks a big bunch. Hugs, Marilynn

ohilly

mgm42 said:

Eil, you and I have similar dx. I was stage 1C, no node involvement, clear margins. I go in to see two of my doctors (rads and surgeon) on the 18th. You better believe I will be loaded with a new line of questions. Strange, but I thought I was so on top of things. Live and learn!!!!!! Thanks so much to all of you. Your research, experiences, and responses have helped me to try and be more thorough in my approach with my doctors. Thanks a big bunch. Hugs, Marilynn

Marilyn, now you can see why I became obsessed with having an MRI. If it will make you feel better, Dr. Hoffman (who is at the top of his field and who I respect a great deal) also did not feel any of these tests were necessary. At least you get a mammogram: as a mastectomy patient, all I will have is exams every 3 months in which they 'palpate' me. I have made my own decision that I don't care what the standard of care is (and I know Dr. Hoffman is telling me the truth because I asked many different doctors and they all said the same thing): I will have an annual MRI if I can find a place that will do it for $2,000 (I have been told the insurance will not pay for an MRI on a post-mastectomy patient because it ISN't the standard of care, but my regular obe-gyne said she would write the order for it anyway and that maybe I could find a 'stand alone' MRI facility (non-hospital) which might be cheaper. So I can relate to what you're feeling, but I think your doctors are telling you the truth as far as the standard of care. Take care, Phyllis