the art of asking the right questions?
letters mean? HER, ER/PR,...
I juat had my first treatment with Fluorouracil, Epirubicin (Atviamycin) and Cytoxan, all together and a Neulesta-shot after 3 days.
The second cycle will be Taxotere.
I feel so stupid, because I am not a medical doctor and don't know exactly what to ask to get answers. What does that treatment mean? I don't know how to compare. My vision is getting worse, can't write without magnifying glasses. 3 months ago I was a 20/20.
Many thanks
Doris
Comments
-
Hi Doris,
Questions are never stupid...that's how we educate ourselves. Consider this fact: most of us here had never heard those words and/or abbreviations in our lives before our breast cancer either, just like yourself...now we sort of throw them round like a ball. Mostly because we asked a lot of questions too and that's how we learned.
I'll try to answer what I can, as best I can and hope it's helpful.
Her2/neu is a particular protein which can be tested for, once your tumor is removed and sent to pathology. Tumors containing this protein are rated on a scale, I believe, of 1 to 3. One means that the cancer contains a bit less of the protein and 3 means that it contains, basically, a lot. Tumors with this protein are considered to be more aggressive than, say a tumor that is hormone positive.
ER and PR, respectively, indicate whether a tumor is ESTROGEN POSITIVE and/or PROGESTERONE POSITIVE.
Basically, if one's tumor is hormone positive, then the tumor was enjoying a boost for growth from one's own hormones. Women whose tumors are hormone positive, are candidates to take drugs, after chemo and any radiation are finished, which block the action of these hormones within the body and therefore, are believed to help prevent a recurrence of the cancer and/or help prevent a new cancer. Tamoxifen is one such drug, used for this purpose. Like any other drug though, there are side effects to consider, etc.. Most women are advised to take it for 5 years, if no problems and/or side effects. It is not given to women whose cancers are "hormone negative".
The Fluorouracil is a chemotherapy agent given to many bc (breast cancer patients), as is Epirubicin and Cytoxan. (You may sometimes see something which says A/C...this means Adriamycin and Cytoxan chemo...a standard for most breast cancers). These drugs are considered best for treating bc...particularly certain types of it.
The Neulasta injection is used to boost your white blood cell count during chemotherapy. Some people have a dramatic drop in either their red or white cell counts or both, during chemo, while for others, it's not enough of a drop to need injections to restore it. A red cell count decline usually causes major fatigue and loss of energy...not enough cells to carry an adequate amount of oxygen round the body. A white cell count decline leaves one open to viruses and all manner of illnesses...even germs and/or bacteria, which normally live in our bodies all the time but are kept in check by our white cells...these germs can suddenly make us ill, if our white count drops too low. Talk with your doctor about the need to have the injections. I personally never needed it and have friends who didn't either so it concerns me a bit that it's being so promoted as a standard part of chemo now. Just my particular thoughts about it. Yet, everyone is different in how they feel about this approach. If one needs it, then no question, it becomes very important, even life saving. Many more women are being advised to have the Neulasta injections as a matter of course, currently, and there are many more ads on tv promoting it as well. One of the common side effects can be bone pain, which many women report to be prominent in the back and/or ankles and feet. You can read up on this drug if you use a search engine, such as: www.google.com and type in Neulasta and you'll find lots of info..
Taxotere is also a chemo agent but structured differently than the cocktail you're having first. Depending upon one's path report, it may or may not be advised. Both Taxotere and Taxol have been around for quite some time. These drugs are known as Taxanes. You should discuss it with your doctor, in detail, prior to beginning it, so you know what to expect, etc.. Again, if you use Google.com, you'll find what I hope will be, helpful information.
One more idea is that you get a copy of your pathology report (if you haven't already) and review it carefully with your doctor and feel free to ask questions, so that you understand the treatment recommendations, which are typically based upon this report. The path report is the cat's meow of knowing what stage your cancer is.
It can be very helpful in making future treatment decisions and in having a better understanding of why certain treatment(s) have been recommended to you, etc.. As you read and research at home, make a list of questions for your doctor and don't be shy about getting answers. It is part of our physician's responsibility to answer our questions as truthfully and honestly as they can. If, at any point, you're not comfortable or satisfied, don't hesitate to see another doctor for a second opinion. This is your life and your decision/choices and you must have information in order to make the best choices for yourself. It's perfectly ok to ask a doctor why they recommend a certain thing and it's also perfectly ok to find out if another doctor agrees or disagress. Even if two doctors agree and you disagree, that's perfectly ok too and you can get a 3rd opinion, or just pick and choose amoung the treatments available. No one can force you to have anything you do not feel is right for you. You can choose a COMPLEMENTARY/MEDIAL approach, which combines traditional medical treatment together with that of supplements, etc.. Or you can choose
ALTERNATIVE treatment, which typically involves no medical treatments, but relies on herbalists, Naturopathic Doctors, acupuncture, supplements and various other healing arts. I've heard of a few women who choose no treatment at all. I only mention the various forms of treatment so that you realize that YOU are in charge of what you want, when, where, how much and for how long.
Some people are into telling others what to do regarding treatment choices. I am not one of those people. I believe in everyone having enough information in order to make the best decisions for themselves and the reason for this is that ultimately, we are the one's who must live with our choices. Therefore, my philosophy is that we have a responsibility to ourselves to learn all that we can about what's available and proceed according to our hearts and our minds...our inner voices.
You may also want to visit: www.nci.nih.gov Find the section on breast cancer and you can follow the many links there. This may help you to get a better understanding of the various and different types of breast cancer as well as finding a lot of info on treatment regimens and staging procedures for bc.
Hope that helps some. Also, hope that your eyes improve. When I was having chemo, my eyes became very watery and then dry...like a yo-yo. Some days I had to use lubricating drops and other days, I needed to daub my eyes with tissue, off and on all day...sort of like what allergies can cause. About a week after treatment, it was no longer a bother, until the next treatment, that is. Everyone is different and so responds differently.
If you continue to visit here, which I hope you will, you'll find a lot of nice ladies who are supportive and helpful. Remember, that's what this site is all about...support, caring, practical advice, tips and just a place to vent whatever we're experiencing. Almost always, someone here has experienced the same thing or something very similar. There are a number of good sites out there. Again, use Google and type in Breast Cancer Support Groups and you'll find a lot of helpful sites to visit.
Please keep us posted and here's a big warm hug:
(((((Doris)))))
Love,light and laughter,
Ink0 -
Hi Doris,
There was a time in my life when I felt the same way as you do regarding questions. Then one day I had a bad reaction to a drug that has never gone away. I LEARNED YOU SHOULD ALWAYS ASK QUESTIONS IT IS YOUR BODY AND YOU HAVE RIGHTS.
I agree you should request a copy of the pathology report from the biopsy, and also a copy of the pathology report after the surgery. Read and compare them. On the web there is a Breast Cancer Dictionary that will give you the definitions of all those HER AND ER AND PR'S. Also call your American Cancer Society and request a call from the oncology nurse. There is no charge and they are very helpful. And last but not least stay in touch with this site. The survivors here are the best.
I just finished treatment 4 of AC, thats Adriamycin and Cytoxin, and the next step is 12 weeks of Taxol, and then 5 weeks of radiation. After that since my tumor was Estrogen, Progesterone positive i will be taking a drug to prevent reocurrence. I learned a lot from this site, and from the AC Society. Do not be afraid to ask questions. Your doctors work for you, and have a responsibility to not only treat you physically, but to listen and answer your questions, and quiet your fears. If they don't do that for you, FIND ANOTHER DOCTOR THAT WILL. THEY ARE OUT THERE.
Last but not least, keep a pad around you, and every time a questions pops into your mind, write it down and take it to your next treatment and ASK THE QUESTIONS.
YOU WILL SURVIVE!
Blessings,
Toni0 -
Doris,
I am just getting involved with the ACS "Reach for Recovery" program....for breast cancer patients newly diagnosed, still in treatment...
Ink gave you the meanings of the letters, and the chemo...but, ask your doctor to give you the number for ACS....there can be a person, like me, that has been thru the whole course, and can offer help along the way....these are all people who have had breast cancer, and are at least 1 year out from their surgery...they 'know the ropes', so to speak.
1-800-ACS2345 is the main number...ask for 'Reach for Recovery'.
Hugs, kathi0 -
Hi Doris,
Welcome,there is alot of information available these days from a variety of sources.We have alot of warm and caring people here willing to help,listen,advise,laugh or cry with you.There is no art to it and there are no dumb questions.Take it easy on yourself,you'll have plenty of time to become intimate with the lingo.
As I said, information is plentiful these days but none as eloquently put as it is when Ink Blot writes it.She makes it look so easy(or sound that way)she really has a way with words.But not only are they words,she has been down this road too.Everyone has different experiences so as you post keep an open mind,use the things you need and store the rest away just in case you need it later.
Oh and the vision problems are probably due to the chemo-ask your doctor what you need to do.You'll probably need to get some glasses,it may clear up later,but until then You still need to function.
Take care , we are here if you need us.
God Bless You
Sue0 -
Hello Ink, Toni, Sue, Kathi,inkblot said:Hi Doris,
Questions are never stupid...that's how we educate ourselves. Consider this fact: most of us here had never heard those words and/or abbreviations in our lives before our breast cancer either, just like yourself...now we sort of throw them round like a ball. Mostly because we asked a lot of questions too and that's how we learned.
I'll try to answer what I can, as best I can and hope it's helpful.
Her2/neu is a particular protein which can be tested for, once your tumor is removed and sent to pathology. Tumors containing this protein are rated on a scale, I believe, of 1 to 3. One means that the cancer contains a bit less of the protein and 3 means that it contains, basically, a lot. Tumors with this protein are considered to be more aggressive than, say a tumor that is hormone positive.
ER and PR, respectively, indicate whether a tumor is ESTROGEN POSITIVE and/or PROGESTERONE POSITIVE.
Basically, if one's tumor is hormone positive, then the tumor was enjoying a boost for growth from one's own hormones. Women whose tumors are hormone positive, are candidates to take drugs, after chemo and any radiation are finished, which block the action of these hormones within the body and therefore, are believed to help prevent a recurrence of the cancer and/or help prevent a new cancer. Tamoxifen is one such drug, used for this purpose. Like any other drug though, there are side effects to consider, etc.. Most women are advised to take it for 5 years, if no problems and/or side effects. It is not given to women whose cancers are "hormone negative".
The Fluorouracil is a chemotherapy agent given to many bc (breast cancer patients), as is Epirubicin and Cytoxan. (You may sometimes see something which says A/C...this means Adriamycin and Cytoxan chemo...a standard for most breast cancers). These drugs are considered best for treating bc...particularly certain types of it.
The Neulasta injection is used to boost your white blood cell count during chemotherapy. Some people have a dramatic drop in either their red or white cell counts or both, during chemo, while for others, it's not enough of a drop to need injections to restore it. A red cell count decline usually causes major fatigue and loss of energy...not enough cells to carry an adequate amount of oxygen round the body. A white cell count decline leaves one open to viruses and all manner of illnesses...even germs and/or bacteria, which normally live in our bodies all the time but are kept in check by our white cells...these germs can suddenly make us ill, if our white count drops too low. Talk with your doctor about the need to have the injections. I personally never needed it and have friends who didn't either so it concerns me a bit that it's being so promoted as a standard part of chemo now. Just my particular thoughts about it. Yet, everyone is different in how they feel about this approach. If one needs it, then no question, it becomes very important, even life saving. Many more women are being advised to have the Neulasta injections as a matter of course, currently, and there are many more ads on tv promoting it as well. One of the common side effects can be bone pain, which many women report to be prominent in the back and/or ankles and feet. You can read up on this drug if you use a search engine, such as: www.google.com and type in Neulasta and you'll find lots of info..
Taxotere is also a chemo agent but structured differently than the cocktail you're having first. Depending upon one's path report, it may or may not be advised. Both Taxotere and Taxol have been around for quite some time. These drugs are known as Taxanes. You should discuss it with your doctor, in detail, prior to beginning it, so you know what to expect, etc.. Again, if you use Google.com, you'll find what I hope will be, helpful information.
One more idea is that you get a copy of your pathology report (if you haven't already) and review it carefully with your doctor and feel free to ask questions, so that you understand the treatment recommendations, which are typically based upon this report. The path report is the cat's meow of knowing what stage your cancer is.
It can be very helpful in making future treatment decisions and in having a better understanding of why certain treatment(s) have been recommended to you, etc.. As you read and research at home, make a list of questions for your doctor and don't be shy about getting answers. It is part of our physician's responsibility to answer our questions as truthfully and honestly as they can. If, at any point, you're not comfortable or satisfied, don't hesitate to see another doctor for a second opinion. This is your life and your decision/choices and you must have information in order to make the best choices for yourself. It's perfectly ok to ask a doctor why they recommend a certain thing and it's also perfectly ok to find out if another doctor agrees or disagress. Even if two doctors agree and you disagree, that's perfectly ok too and you can get a 3rd opinion, or just pick and choose amoung the treatments available. No one can force you to have anything you do not feel is right for you. You can choose a COMPLEMENTARY/MEDIAL approach, which combines traditional medical treatment together with that of supplements, etc.. Or you can choose
ALTERNATIVE treatment, which typically involves no medical treatments, but relies on herbalists, Naturopathic Doctors, acupuncture, supplements and various other healing arts. I've heard of a few women who choose no treatment at all. I only mention the various forms of treatment so that you realize that YOU are in charge of what you want, when, where, how much and for how long.
Some people are into telling others what to do regarding treatment choices. I am not one of those people. I believe in everyone having enough information in order to make the best decisions for themselves and the reason for this is that ultimately, we are the one's who must live with our choices. Therefore, my philosophy is that we have a responsibility to ourselves to learn all that we can about what's available and proceed according to our hearts and our minds...our inner voices.
You may also want to visit: www.nci.nih.gov Find the section on breast cancer and you can follow the many links there. This may help you to get a better understanding of the various and different types of breast cancer as well as finding a lot of info on treatment regimens and staging procedures for bc.
Hope that helps some. Also, hope that your eyes improve. When I was having chemo, my eyes became very watery and then dry...like a yo-yo. Some days I had to use lubricating drops and other days, I needed to daub my eyes with tissue, off and on all day...sort of like what allergies can cause. About a week after treatment, it was no longer a bother, until the next treatment, that is. Everyone is different and so responds differently.
If you continue to visit here, which I hope you will, you'll find a lot of nice ladies who are supportive and helpful. Remember, that's what this site is all about...support, caring, practical advice, tips and just a place to vent whatever we're experiencing. Almost always, someone here has experienced the same thing or something very similar. There are a number of good sites out there. Again, use Google and type in Breast Cancer Support Groups and you'll find a lot of helpful sites to visit.
Please keep us posted and here's a big warm hug:
(((((Doris)))))
Love,light and laughter,
Ink
many thanks for your help and hugs (desperately needed)! I'm learning and asking, even got some answers. Knowing makes it easier on me. Guess, I'm pretty lucky only being stage 2, but the battle just started.
God bless ya'll and thanks again for your support.
Doris0
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